Day +6: Illuminate the Path

PICC line placement - Procedure Services

In the days after the fever sweats, the rapid environmental exchange between hot and cold, rhythmic rabbit-like leg shaking, hypersensitive nasal passages, and the amorphous sea of emotion-laced thoughts fade away, comes clarity. I reflect on the pain and the pleasure that all comes together in some kind of sick twisted cosmic sadomasochistic event and I’m disgusted by the true baseness of the human mammal, in captivity. As much as I know how lucky I am to have all the extravagances of federal funding I am just as displeased that there was no significant or marked difference that illuminated my sentence in this prison. I suppose this is why inmates, despite serving their sentences at different facilities, are able to truly understand what each other must have gone through. I suppose that captivity, the state of being, is not different whether you have a nurse call button, a menu to order food from, or TV you don’t have to pay $8-$10 a day for. The mind still degrades after remaining in exile from the constant flux of environmental stimuli commonly found in the world beyond the white walls. The earnest plea to escape is one that finds its voice only after the treatment of the inmate is complete and the inmate agrees that all necessary measures have been taken to remedy the ailment that plagued him/her before he/she entered the facility, unless AMA, or, worse, if a set of objectives have been met. In the days after the necessary fees are paid during the withdrawal phase, I find myself growing increasingly perturbed and agonizing over the simplest things – things that normally would not have made me flappable. As I’ve always done, internalizing the words that I would give birth to externally is a painful process and perhaps affects my overall mood much more deeply and thoroughly than any other facet of my existence. I am concerned mostly by words: words that I sometimes judge, are not necessary to share, and in other cases judge them free after their time in captivity. It is the maelstrom of thought that is the cauldron of communication. It is the translation of feeling and emotion in relation to the actual understanding of the body’s response to various stimuli that is the basis for most of my reflection, but it’s all shades of gray as you will also see.

The problem with the patient, the expectation of the medical practitioner, and the communication between the two is that both are speaking very different languages. After a while, even with no medical degree, one begins to understand the jargon associated with the ailment of the body and then begins to enforce the usage of that language as a tool for clarity. The expectation of the medical practitioner is indeed straightforward: he/she wants you, the patient, to clearly communicate the various nuances of the ailment. However, the problem with that is, subjective feeling (even if well understood by the patient) is in a different language than a medical description of that feeling. To describe sharp, localized pain, radiating from the hip down the leg in terms of feeling, is confusing and incredibly hard to do. When referring to sickle cell pain, it is very often sharp, localized, and sometimes radiating, but this system of reference is re-enforced by medical practitioners using leading words to describe a particular feeling even if you only understand the words after you feel a certain way. So to say all of these things means nothing at all in actuality and perhaps means even less than the most arbitrary of all things: the pain scale. To describe in terms of feeling, in the internal idiolect we are most comfortable with, the descriptions of the pain we are feeling is like the difference between writing a creative writing essay based on a prompt and a scientific paper. Both are indeed written in English, but are separated by an ocean of words that simply do not translate across the water. So, I decided I’d be more scientific about my descriptions of my pain. “It feels like little bombs are going off in my lower back” and “sharp, localized, lower back pain” are indeed two different things, as they tend to be quite often. Perhaps it would serve both the medical staff and myself better to unify under the umbrella of data-laced scientific jargon. So I’d say instead, “the pain is sharp and pulsates every other second, intermittently punctuated by momentary relief, and bursting again and again in cycles of pain and relief.” The problem with language is that words are arbitrary and only hold the meaning the user ascribes to it. Words contain a general meaning, but the relationship between that meaning and the word itself is arbitrary. Localized pain means something specific to medical trainees, but is something that is very hard for patients to figure out. How localized is local? What’s the difference between sharp, cyclic pain and stabbing pain? What’s the difference between a 7 and a 8 pain? The confounders are the terms, the meaning of the terms, and the understanding of the meaning of the terms.

The more I reflect on humanity, the more I feel that the prisoner’s dilemma is present within all of us. The random assortment of human beings in different places all over – some alike, some not – form clusters of various importance. Even the family unit, as unruly and unkempt as it is – is a strange beast. It is filled with all manner of good looking, bad looking, so-so looking, and invisible folk such that there is little uniformity across the board. It then became my question to ask: what about us forces us together into units – working units, playing units, singing units, unit units, miscellaneous units? The answer is: prison. In virtually all aspects of life, we tread very familiar singular paths or even, if unknown to us at the time, unfamiliar paths blazed by a vagrant narcissism that has no basis in reality. To move from one place to another, as much as I had thought for many years was some magical stardust of randomization, appears to me now, to be nothing but closed loops: individual hamster-ball prisons that we cannot conceive because every day seems different and unique. So I asked myself, what about Bianca in the Medici’s or Andy from Northend? Did they have a choice in their strange worlds so unique and apart from each other? Do they find some kind of strange freedom within the desperate repetition of mundane tasks?  What about the people around them? Did they have a choice? Not really. So thrown together on this strange Pollock is the beautiful and the divine, the damaged and the apathetic, and together they make a fascinating study because you can draw lines between all of them – very particular, strong, permanent lines. These lines never escape the prison walls, and somehow, every other line is connected to another prisoner, within the greater prison industrial complex.

So how do we start pulling together all of these individual pieces: The words that have meaning, but not really; and the prisons, prisoners, and ties that bind us all together in a giant inescapable spider-web? I made the claim that all of us are combatants in this war, but our weapons are aimed at each other. Words become tools of war, instead tools of communication and healing. Understanding intent is what we struggle with. I would think 4 or 5 times before giving a patient who is on a 4 hour drug dose, his/her drug dose, especially if he/she only complained of pain ever 4 hours, like clockwork. However, pain is not simple to understand and intent is not easily decipherable. Some pain is additive and builds up over time, other kinds of pain are temporary and fleeting, there are certain types of pain that do indeed appear at very specific times of day or night, and still more that are larger in the mind than in the body. That is not a very complete definition, but in my own long history with it, today, faced with that same decision, I would think may be 2 or 3 times less. Now if we add intent to that already virulent mix of things, we are faced with a bigger problem. How do we derive intent? How can we qualify intent? If there is some kind of objective intent-identification system, then I think we need to get it into the medical texts as soon as possible. I think the animal in captivity is already a slave to too many things to be able to maintain focus and clarity long enough to con the system into working for its intent. It’s so very easy to pull at the threads of the patients out to con the system, because, most of them are stupid. It’s so very easy to tell the difference between a strategist and a flagrant drug-seeker because the fault with the strategist is the plan; the fault with the flagrant drug-seeker is the lack of one. To con the system requires a great and in-depth study of how things work: to acquire, in essence a partial medical degree with a very small area of focus. However, what is also necessary is an understanding of medical administration, psychology, and the will to conduct and execute in-field studies on living, random subjects. The drug addict is too incapable, and the strategist too concerned with playing the field, but what does that say about me? At this stage, perhaps we have already divined intent and understood the words and found them to be a sham, but there is another problem and that is: evolution. This use of the world “evolution” is not scientific and does not represent “change over time,” because in scientific study, the reference is to change over multiple generations over vast periods of time. The use of the word here is to represent the change in the behavior of a single organism over multiple experiences within the set of similar events (i.e. Drug Seeking Behavior). The traits which help us identify and root-out problematic individuals are hard because each individual has as much phenotypic variation with regards to behavior as individual members of a single species. Individuals adapt, learn, and grow in their ability to refine and edit a set of behaviors to better suit their needs. This is why I refer to those stuck within this little drug-seeker’s nightmare heaven, as animals. We who are not as others, end up being exactly like everyone else. It’s the small things that change, slowly, over time. So if words can be identified as not really the major source of our problems, intent identified as a bull too hard to wrangle, and evolution identified as another prong in the attack against our medical systems, then all we have are questions, not answers. The problem grows because we learn from fellow prisoners, our family members, our children, and it disgusts me that we have to tell our fellow prisoners, our family members, and our spawn to present a condition that may or may not be, in actuality, worse than it is. We go to the ER with 10 pain, writhing and turning like possessed stunt-doubles in The Exorcist, to sell the case to the system and ensure that we are treated, even if its not honest, quickly and on time. This reactionary behavior is directed at all the overwhelmed ER nurses and doctors who can’t keep up with the influx of patients, especially at nights, certain days, and at certain times of days. We make sure to go to the ER when there are not many patients, in a sufficiently horrid state of affairs, and all the while making sure that a particular narrative is bought and sold on this black market within the greater medical framework. Can we reduce it to words, intent, evolution, learning, and the problem of the prisoner who is not in isolation? I think we’re getting there. These are the lines that are illuminated along the dim and slime-ridden passageways of healthcare. Somewhere lost in our baseness and our disgusting behavior is the need to understand the specifics in no uncertain terms. So, we start here. This is the first step to illuminating the path to hope.


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