Pain on Fire: Where the Truth Lives...and Where It Does Not
Updated: Jun 6, 2021
If Type A is how you roll, like I often like to, pancreatic pain will burn you from inside out, in more ways than one. You have to learn to let go of how you want things to be (perfect housekeeping, perfectly coifed hair, makeup on, to-do list done, etc.) as day after day of unmitigated pain, searing, sawing, stabbing, burning, shooting will bring you to a state of collapse, crying out to whatever gods there be for release from this mortal coil.
If that goes on long enough, that really is the only thing you will want, and that is not unreasonable. No. It does not have to be this way. It is made this way, by a healthcare system that simply does not take into account the real humans behind the universe of conditions that can cause unspeakable suffering it chooses, no it fails, to treat, over and over again. Opioids have a place, as do the meds I am being denied. We are living in a mindless culture of "no," no matter what.
That is what we have, a careless healthcare system that is recalcitrant, callous, inconsistent, slow, and blind to the pain of so many. My meds were supposed to be here today. My beloved Renisha G. of Medicare's Part D did her part and CVS made promises to her they just did not keep, as I again waited for promises unfulfilled, days more of a body weary from extreme calorie deprivation on top of ...all that. My pain control is not here, and I lay trapped in a body I am unable to escape.
I can't speak to make a video. I can't bear the tone-deaf defiant words of well-meaning friends who keep telling me to "think happy thoughts," when they have no idea what I am living through. It is true. Well-meaning is simply not well-doing and I can only deal with one insufferable thing at a time.
The truth lives in my raging tears, unheard, save for the kind souls who know just when to call and just what not to say. This is no time for airy-fairy ka-ka. The truth lives in my utter collapse, my crawling to the bathroom, or holding onto the walls because I can't bear the pain and hold my own weight.
The truth lives in the terror that I will ever be lost in a system disinterested in helping me or others like me because healthcare reform and helping people like me appear to only be en vogue during an election season. The truth lives in my devastation and disorientation from a brain that is just not made to function on such a low-calorie intake. Dizziness is a near-constant, fainting never far off. The truth lives in misspoken words I have to correct and often do not hear the first, second, or third time because my brain is so weary...it just... can't. I am not ashamed. I feel broken, right now.
The truth lives in my will growing weak as my body does and that being foreign to me in a way so new to me I feel I should be afraid. Fear is somehow just beyond my bandwidth. I don't really remember when last I felt this sick, this lost in pain, this forsaken. That could be the pain talking or too many years of fighting it, but it is gospel truth, nonetheless.
Truth does not live in empty platitudes and unanswered prayers, unanswered pleas while I hang on for dear life and wonder how much more of this I can take as I make call after call or bear broken promise after broken promise, no matter who makes them, as the pain continues to engulf my body, as I can't give it the food it needs and the medical establishment, Medicare, Wellcare, providers, politicians plod on, business as usual. Because one thing is becoming increasingly apparent.
This life does not matter. And I am losing this battle. That is a truth I don't know how to overcome, any more than I could nine years ago when this hell started, any more than I could overcome gravity itself. So maybe it is truth, after all, just one with which I can not live.
This is the medical science of pain. I live in a human body. This I know. This is unbearable and the absolute truth is, without fast help, I do not see how in the hell this is supposed to be survivable. Could you live on false promises and 60-250 calories a day and scream-worthy pain that you have had so long you just don't scream anymore?
I am one of many and have had a number of heartbreaking interactions with people who share my fate, prisoners really of a system trapping us needlessly in a vicious cycle designed to keep us sick, and frankly, for the first time, I'm beginning to really believe...to kill us. It might be easier not to fully fail to treat a disabled person in pain and wait them out and eventually save the cost of keeping them alive than to just do the right thing. Why else would this many barriers, with this much medical science, with this much evidence be present, be erected and there be such slow response for so many people suffering so greatly? How in the fuck can the intent, in fact, be to save lives, and not end them?
This is pain on fire and the truth is it is totally avoidable. Our discompassionate, medical system chooses to let people like me suffer, even at the risk of death and catastrophic disability, denying the possibility all the way, too often offering empty condolences (post-death) to our loved ones, as if it did not know or have the power to intervene in the first place.
Take it from someone who has lived this ugly truth for nearly a decade. This is where the darkest truth lives and where a "built this way" system needs to face reform, or perhaps, demolition so it can embark on the mission of true service and care for the health and welfare of the people it claims it wants to help, doing no (or least) harm. This only applies, of course, if "no or least harm" and the Hippocratic Oath have not already been replaced with "highest financial return."
From where I lie, more than a week of pancreatic hell in an arena I never wanted to enter, it sure feels like I am an unwilling tribute in some sick version of their Hunger Games. I just wonder how far Medicare, Wellcare, and this sick healthcare (read sickcare) system will take this and whether this time, I will survive. My emergency supply of meds is not here and I am not finding relief anywhere else. This is one brutal arena.
This is one truth I don't want to be living, should not have to be living, a truth no sick, no disabled American should be forced to live.