Compared to yesterday, I had zero spine flare-ups, but compared to a baseline average, I had plenty of physical opposition from my lower back, tailbone, and left leg for dominance of my consciousness. I had purposefully decided to take today off, but I half-figured, if my health were in a decent condition, I might try to do at least something. The most I could do is cook food for myself and mentally prepare for tomorrow.
Within 12 hours, I’ll hear my doctor’s plan about my healthcare.
The absolute worst-case will be a “fuck you” along the lines of what every other doctor has provided from me. No doctor has directly said that, but they’ve implied it through a series of actions to distance themselves from me as a patient of theirs. The language becomes less about me and the doctor and more about a qualified doctor, the best doctor, the doctor that will be able to take care of my complicated, yes, case. But not to worry! When the doctor distances themselves from me, they’ll still be kept in the loop. The loops will be kept around, and surely, there will be nothing for me to worry about with this new doctor.
So I’ve gone to these new doctors and each new doctor knew nothing about my case.
I’m not sure if this same sort of thing will happen tomorrow morning. I’ve conserved enough energy for myself to where I might assume that I might drive somewhere to pick up new medication, at least, or if not that then at least to get my mail from the mailbox, and maybe even – I say as my tailbone flares up enough to steal my concentration – groceries? If I can’t get groceries, I still have enough food, so I’ll pay a fortune for fast food instead of spending equivalent amounts of money on significantly more, longer-lasting, and better-quality food. At least the food will be decently fast.
I’ve worried about tomorrow all week.
What if the news is good? What if I can, eventually, return to a life where if I drop something my immediate reaction isn’t “if it’s unimportant, I’ll leave it there, if it’s important, let me spend a few minutes trying to figure out how to lift this up.” I don’t have the energy to keep doing this forever. My health is objectively worse than 6 months ago and objectively significantly worse than 18 months ago. I am trying my best to pace myself each day for the long haul, where, I imagine it could be another 6 months of this. How many more months will I continue before my body can’t? I’ll keep fighting, but if this meeting doesn’t turn out well, that will push me up closer to that wall where my body can’t keep fighting. I’ve felt inklings of that throughout the week, and I don’t know how many more my body can take before it stops working.
Waking up suddenly with my hand over my heart is not a positive feeling.
I must assume the worst because, otherwise, I will have an intense sadness to deal with in addition to dealing with this health problem. The sadness of living in what is touted as “the best country in the world” with “the best doctors on Earth” and yet when I call out to them in my time of need, I am met with apathy or disgust. I know it is easy for me to say this now, that if I do recover, that I will dedicate portions of my life to preventing this from happening to others. It’s easy to make promises against future actions. Of course, the dying person would promise anything to prevent death. I think this promise is, however, baked into my fiction writing at least. Novel 01 took place in Eville Hospital, and before my health got this bad, I had intended to set future novels in the same location. To practice my writing times, as a speedrunner might practice playing through a game, before branching out into other stories with other characters.
Will I be able to achieve that writing and lifestyle goal?
When I play videogames or broadcast, those are pleasant distractions from the goal. It’s like a main quest with a polite side quest that helps boost the main quest – say, doing a silly thing to get some better skills or stuff. If the side quest becomes too distracting, as I could imagine it would be if I were to lie after recovering and do nothing to help other chronic pain patients, disabled people, and healthcare systems to improve rather than devalue their processes… well, that wouldn’t be good. That’s where I look back to my chosen name: Zombiepaper. My etymology is that Zombiepaper means “writing about control,” where I observe the zombies in life and I use paper to express them. This sort of theme goes through everything I do.
I don’t think I’ll change my name or my name’s meaning if I become better.
I’m writing this late into Thursday evening. My doctor wanted to talk with me on Friday morning to do research and contemplate my case. Whatever my doctor did has been done, so there’s no point in speculating whether that is a good or bad situation. After I write this essay, I’ll try to get to bed, then wake up early so I can have my wits about me. I didn’t record our in-person meeting, but I will record this meeting. When I moved my phone to the spot where I’ll record the meeting, I dropped some paper notes on the ground. It may take between a week to several weeks for me to pick up those notes now, because I can’t casually bend down to pick them up.
This is what I’m fighting for.
I’m fighting for my right to exist in American society. I have thought of moving to Canada to receive their healthcare, if the American Healthcare System continues to subjugate me to a life of misery like this. The 20+ doctors I’ve seen that have ignored me in the ways they’ve done have dehumanized me to the point where I am almost seduced into feeling like if I drop something and struggle to pick it up that it must be my fault. These doctors maybe didn’t instill a sort of institutional hatred toward disabled people like myself, but they certainly didn’t empathize enough with me to consider me to be worth their time.
Will this doctor be added to the numbers tomorrow?
If so, that’ll be a shame, since this doctor seemed to be invested and empathetic in wanting to help me out, but if the response is similar to what I’ve experienced since April 2020, then I have to cut that off as quickly as I can – to go back to the insurance company, to file a complaint, and to move forward with getting treatment. I don’t care if the news is negative, so long as there is progress toward positive news, so I wouldn’t report this doctor for saying “you’re fucked,” but only if the doctor says “fuck you, I won’t help you” as almost all of the others did. That’s why I stopped going to them. Why would I go back to doctors that, months back when I was still much more mobile, look at me as though I were a waste of their time?
Am I worth more of their sacred time now that my physical condition is worse?
Perhaps most of these doctors are equivalent to fast-food workers that want the easiest jobs possible, and when they get someone like me that has dietary restrictions, they responded in hatred. How dare the customer ask for a burger without pickles? I’m going to fucking blast this burger with pickles! I worry that this will happen tomorrow because it’s happened before. Everything I saw when I met with the doctor and the doctor’s assistant on Monday was counter to this, but it’s deeply ingrained in my soul, so I can’t help but feel hesitant. I’ve been abused constantly by the American Healthcare System, so if this is my out, it’ll be almost too good to be true.
What would my life look like in servitude toward better treatment of patients?
I have a minor platform on which I broadcast out. I would be featuring more healthcare-related things, either as focused podcasts or telling more stories about my life. I still have all this paperwork to go through, so when I do, I will gather more evidence to keep reporting these doctors to my old insurance company, and maybe even to my new insurance company. The doctors who treated me the way they did should be legally held accountable for their actions, and not just by me blasting them in some writing, but actually held accountable. Insurance companies love knowing what doctors are insurance risks, as in, which doctors will provide substandard care to patients.
I want to normalize the process of reporting doctors for bad behavior/actions.
If I get my health back, there are many areas in my life I want to reinforce. I want to clear out a majority of my possessions and move somewhere cheaper, quieter, and more polite to me through my disabilities and beyond. I have to broadcast in the mornings and afternoons because I am restricted by quiet hours – I can write, I can listen to music through headphones, and I can walk around my apartment, but I can’t do much more than that. I couldn’t have the Jack Move dev on a call as I played through the demo since our time zones and my quiet hours wouldn’t allow it.
My former materialistic mindset restricts my best future lifestyle.
The more of this I can clear up, the more I can focus on doing things like figuring out how to communicate for people like myself that are controlled by their healthcare systems and unable to navigate through them. I have friends and acquaintances that, too, suffer through chronic pain. Yesterday, I could not write much of anything, let alone do what I needed to do for physical errands related to living in America. Were it not for having years of savings to burn through, I could possibly have become homeless. What would I have done then? I would have been left on the streets to die. Let’s work on that more. The glamor of richness doesn’t seduce me. If I have enough to live comfortably on, why would I want more? I take more pleasure in knowing that I’m being helpful to others than I do in owning more things.
What if I could impart that value to more and more people?
Materialism, money, and fame are easy metrics for success. My funny numbers on social media platforms imply a certain value of self. Some of those numbers mean people care about me, right? What if the true value of a person weren’t in those numbers, but in the numbers of people that are positively impacted? What if I count the number of people that saw my patterns of operation and applied them to their own lives? Virtues of living for self-betterment and world-betterment? Helping others through their tough times, regardless of how difficult it might be, and letting them stand up on the stage that I’ve built and give them the microphone to share what they wouldn’t be able to share otherwise.
There is a power behind what I’m doing – will that power help me tomorrow?
That power, I’ve found, will support me through difficult times assuming I go in a direction that serves the greater good. The podcasts are going well because it’s not about me. I am achieving some degree of social success because I’m not in it for my own success. If I get success, neat, but I’d rather see my friends and people I respect succeed on their terms, too.
Will tomorrow be a successful day toward my spine recovery and disability rehabilitation?
|Sources: My personal experiences.|
|Inspirations: Writing about my thoughts related to my recovery from disability…|
|Related: Sober Living essays and Tripping On [The American Healthcare System] chapters.|
|Written On: 2021 July 29 [10:21pm to 11:02pm]|
|Last Edited: 2021 July 29 [First draft; final draft for the Internet.]|