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?”
The first time I went public with Parkinson’s, my bladder made the announcement. I have not talked about Kappa Light Chain Deposition Disease. It’s the enemy within. It’s the cancer that will likely kill me.
Consider this the follow-up nobody asked for. You’re welcome.
For several days, I lived inside the kind of pain that hollows you out. Not just physical pain, though that was real enough, but the accumulated weight of years of being managed into silence. Then one morning, steadied by rest and a small mercy of pharmacology, I made a decision. I reached out to my supervisor and contacted a VP directly. I handed them a log of everything that had happened since January 1984.
Could I be fired? Yes. Likely? Probably not. But something shifted the moment I sent that message: my supervisors no longer controlled the narrative. And with that shift came a question I could not stop turning over in my mind.
Would a spiritual person — a Buddhist, a Christian, a person genuinely trying to live with compassion — have done what I did? I have been sitting with that question. Here is what I have found.
I am tired, but my body refuses to die. It’s the constant hum of pain. Living in a body that constantly hurts is an exhausting experience. It’s not just the sharp, stabbing moments or the dull, throbbing aches; it’s the constant, low-grade hum of pain that fills every quiet moment. It’s the kind of tired that sleep can’t fix, a deep-seated weariness that seeps into your bones and colors every thought.
Breaking News: CNN’s ticker blared, “US military ordering thousands more troops to southern border.” Unnamed officials confirmed that thousands of additional active-duty troops are being deployed to the southern US border with Mexico. The stated purpose: to support Homeland Security and Border Patrol operations. Speculation is swirling about whether this move ties into Texas’ construction of an 80-acre facility outside Eagle Pass, rumored to be a deportation or detention camp. Official confirmation on the facility’s purpose remains elusive.
In an NPR interview, Eagle Pass resident Jessie Fuentes criticized Texas Governor Greg Abbott for creating what she called his own immigration force and court system. “Why are we allowing this to happen? Why are we allowing our governor to become a dictator and authoritarian in enforcing immigration policy?” Fuentes asked.
Just before Christmas of 2023, I told my mother that I had a life-threatening disease with no known cure. I provided all the sordid details: how I did quite a bit of internet searching. Yeah, sure, I self-diagnosed myself with everything from work-related fatigue to amyotrophic lateral sclerosis, long-COVID, and finally, progressive supranuclear palsy. I researched close to twenty different diseases. But at the end of the day, the only thing that fits (at least for now) is Light Chain Deposition Disease (LCDD) or AL Amyloidosis. I took her through all the appointments, all the tests, and all my frustrations. I skipped the part about survival: from 1 month to 10 years. I mean, hell if I know.
The Band of Brothers episode, Why We Fight, is a testament to the bravery of our past. Yet, with time to reflect, some soldiers wonder if the fight was worth the number of lives lost. Then Americans encounter the Kaufering IV concentration camp. Liebgott asks, “Was is das hier? [Why are you here?].” Turning to Winters, Liebgott states, “He says it’s a work camp for, uh, unerwuenschter. I’mI’m not sure what the word means, sir, uh, unwanted, disliked, maybe? Further clarifying, “No. Actors, musicians, tailors, clerks, farmers, and intellectuals. Ordinary people.” Yes, the episode is a powerful reminder of American bravery, but it’s a lesson to guide our future.
After several weeks of no response, my personal physician responded to my email. After several comments about not noticing my question, she apologized for her tardiness. “Maybe we should try another neurologist,” she wrote. After reading her response, I turned the computer off. There was no counter response. Not that I couldn’t respond. Simply, I am too tired to pursue anything further.
Understanding a world where you believe to be an outsider takes patience, but the payoff is massive. That ‘payoff’ is one of many lessons Craig Foster attempts to teach in My Octopus Teacher, an unusual story of the bond between Foster and a wild octopus encountered while freediving. After watching the film, I admitted to a greater understanding of life in the next world, life here in this world, and the interconnection in all worlds.
Over a month has passed since the last blog post. I am still trying to figure out why. I may be burnt out. “From what?” one might ask. Sometimes I believe the world is tired of hearing about my various medical freefall(s). And while it’s a great relief to talk about such conditions, they are not ‘page-turners’ for readers.
