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.


Day +5: A Treatise on Hope and The Luciferous One

Pretty Fans

The last post, according to my own standards, came from a place of deep pain. It contained within it meaningful soulful expression and was raw and untempered, by design. Within the words are so many more words and stories uncountable, like grains of sand. Upon the foundation of that miry clay, we can only hope to build upon – even, if only, in vain. The key word there is “hope.” Hope is the only superstructure that can be supported by our feeble pillars and posts. It is the only light that shines in the heavens, that has not aged before it reaches us. I cannot begin to venture into grandiose explanations of hope in its myriad forms. It would be an onerous task, and I don’t claim to be particularly proficient at understanding many of the concepts we like to throw around today, without actually contemplating their meaning. I began with talking about pain because it was the only thing I knew best in this world, but after so many years, realized that I knew nothing about at all. I only came to this realization after encountering one of Nisio Isin’s most endearing characters, Tsubasa Hanekawa. One of my favorite lines, filled with a truth I am beginning to embrace every day, is her catch-phrase: “I don’t know everything. I only know what I know.”

On a side note, I highly recommend his series of light novels collectively called Monogatari (The Japanese word for “story”). It is filled with the kind of word-play and bleak humor you read here.

The same is true, as examples, for the concepts of “salvation,” “peace,” and “love.” No, this is not a nihilistic analysis of philology. It is an attempt to keep the promise in my first post:

Therefore, I will endeavor in every entry to pay particular attention to some truth. Truth is finicky and often, gravely subjective.

Whether hope takes the form of God, something positive, change, latent movement, or potential, it is a structure that spans obstacles. It is a bridge between now and then. It is a bridge from where the grass is dull and weed-ridden, to a place of greener pastures where sericeous leaves drip the honeyed dew of salvation. This is directly in contradiction to the loquacious voice in me that penned the last faceless entry. That voice is the voice that says, here is no better than there: “Everywhere, man is in chains, but more importantly, in a cage of his own construction.” That voice gives us, as readers, a visceral reaction and awakens within us, a primal desire to feel. However, that voice lacks hope. That voice, ironically, is in chains and still haunted by the fact that everywhere it looks, all it can see is familiar material – building blocks that it collected to entomb and contain. This is why there are few addicts who don’t feel the need to instinctively defend themselves and instinctively blame everyone and everything else. Somewhere in the addiction is safety, a familiar face, a routine that keeps moving things forward, a la Red Queen. Funny isn’t it, how normalcy and a state of addiction are not all that different. Don’t we also desire safety? Don’t we chase everything under the sun that relieves us of our suffering and unhappiness? Don’t we envision a better life for ourselves that is almost identical to that of any random stranger on the street?

When I have money, get that job I want, or marry the right person for me, then, things will be better.

All I want is a house to call my own, enough money to pay my bills on time, and a car that shows others I’m not stuck in the same hell as everyone else, anymore.

It’s all too familiar; this inescapable herd mentality. I’m being excessively reductivist just to make a point.

When I get rid of this disease, I’ll be a better version of me.

That’s what I told myself and super-glued the hope in those words to the skin of my heart, so that there was some faint flickering candlelight at the end of the tunnel that eats all light.

The tunnel was so dark during those years of addiction that I remembered Plato’s ‘Allegory of the Cave.’ If Einstein is to be believed, then all thanks goes to my high-school AP European History teacher for educating me when I was blind to the overwhelming burn of illumination. In Plato’s allegory, prisoners shackled at the neck and foot see shadows of things being cast on the wall. These shadows are reflections of real things being carried by real people, or peoples themselves, as they pass by a fire that then transforms their images into a fictional simulacrum. This fiction is augmented by the fact that these shackled prisoners also hear sounds these objects make, and contrive a reality for these objects in name and in thought. After all, could they do anything else? If all your life you could only see shadows and could only hear shadows, then isn’t that as real as things can get in your situation? Plato goes on to say (I’m fast-forwarding here, since philosophy quickly puts people to bed – a million dollar idea for inducing sleep!) that if these prisoners are released from their chains, slowly the world in its truest form begins to reveal itself. Soon, the shadows reveal themselves to be fantasy, and that which casts the shadow, revealed to be something more tangible: real. Both fantasy and reality, mind you, are fueled by the same fire. Things just take on a different appearance, one that the human mind separates. I’m sure the voice of the faceless post would interject here to point out that: “Fantasy, reality, it’s all the same thing. It’s just noise.” We like to think that fantasy and reality are mutually exclusive – that is to say that they cannot exist together in the same place – but surely Plato would point out that both the shadows and that which gives the shadows form exist in the cave together, simultaneously. I don’t know who would be more right. The complexity of humanity is such that fantasy melts into reality on a daily basis. We are deluded by the shadows on the wall when shackled, and then look to the shadows (that we have named, as if they were our pets) fondly, with a look of longing and regret. Some of us would happily return to fantasy, because our reality is often bleak and riddled with the bullet holes of the vengeful tax-collector of life. Most of our fantasies are different, yet sadly, constructed from the same pieces – the only pieces – humanity is given to play with. They are different pets because we all love our pets dearly and think they are the most unique souls in the world. They are the same pets, because different breeds of dogs, are still, in the end, dogs. Different Capuchin monkeys, are still, monkeys.

Illumination is just a fire. Enlightenment, is the sun. Plato then asks, what if one of these prisoners, drawn to a light he/she cannot understand, escapes the cave. Then, wouldn’t the sun give tangible form to all things in the world and subdue fantasy like a heavy-handed prison warden? Wouldn’t the newly freed soul then be able to contemplate the light which erases all doubt? Would it be easier to understand the seasons and the new concept of days? Would night reveal more about the world than just the sun was capable of doing? All of a sudden, wouldn’t the man or woman finally understand that light and dark is part of the same coin – both vital and necessary to complete understanding? Fantasy and reality unite, but not really. Would the man or woman understand that the sun illuminates the moon while it casts its shadow upon the Earth? Enlightenment is the light beyond which we cannot see. Hope is very much the same.

Lost in the limitations of the senses we awaken to find hope. When do we discover if our fire is hope or our sun is hope? When do we realize that the world is just a much larger cave? Is it after contemplating all of reality, and all of fantasy? Or is it much sooner?

I’d love to suddenly bear wings and take to flight. My flight would be exactly like that of Icarus’. I’d love to feel the firmament with every cell in my body and drink in the eternal rejuvenation of the light of enlightenment. I would love to hope for the sake of hope. It is the only light I’ve ever known. It is the only sun, I’ve ever had.

“Long is the way and hard, that out of Hell leads up to light.”

John Milton, Paradise Lost

My hope is in a God that could not possibly abandon his weak and infirm creations. We are slowly decaying from the moment we are born. The illusion of biology is in the fact that we grow: some of us, a lot, others, just a little.

My hope is in the paradox of positive and negative: My situation is far, far better than poor sob X. Although the voice of the faceless post is whiny and attention-demanding (ironically), it is based on a mirage that is as real as any oasis could possibly be in reality. There have been so many damned souls in hospital beds next to me, that I was wholeheartedly convinced of my greener pastures. The weeds turned into radiant tulips and the vile muk that invaded the ground, turned into heavenly aloe that I’d willingly bathe in daily. The old man whose wife was slowly killing him; the old man who died just minutes after I dragged my IV pole to pick up his water jug and give him a drink while my sister was in bed waiting for me to return to a show we were watching; the vet who was so horribly treated that the nurses and doctors did not give him any pain medication at all (all because he did not have insurance; not like my top-tier insurance that covered everything); and the addict who endlessly kept the radio on as he turned and turned in tormented sleep and coughed horribly like some baying creature, such that I could not bear it any longer and demanded immediate release the very next morning (against medical advice) – all keep me firmly rooted to the ground. I am no one. I am nothing. My pain is a drop in the ponds of infinite suffering. I am positively blessed, to not be as cursed as the rest of them.

My hope is in change. We chase change like it can fix everything that is wrong with us, all at once. A change of scenery perhaps to fix your depression? A change of women or men perhaps, to fix the gaping hole in your heart? A change of drugs perhaps, to freshen things up and add a bit of pep to the oomph? A mix of uppers and downers you say? “Hmm, intriguing combination, I must try it.” Does going up and coming down, return me to normal? So you get how many men/women in bars as they stare at your perfect abs and arms too large to fit into your shirt sleeves? My hope is in the small steps that change entails. Just like the parhelion phoenix,  change takes time and effort. Transformation, is never as easy as it was for Gregor Samsa, but if Metamorphosis was saying anything, it was saying, change, spurs on change. Change, as a tool, is invaluable to transforming slowly, one step at a time. That’s how we look at the sun, look at ourselves, and fix the broken system, and fix ourselves.

Fall, to rise.

My hope is in latent movement. The soul, the heart, the mind, and the body (if you’d like to combine the first three, dealer’s choice) are all capable of movement. You were witness to it when you read the words of the downfallen. You allowed the pitiful voice its agony. You respected its struggle and you reached out to it from within. The body is also capable of movement. If working out makes you feel better who am I to tell you that you are chasing a fantasy that will never be realized? Who am I to tell you that you are deluded into believing that more people will look at you, or see you (whichever you prefer)? The truth is wholly subjective. My truth is entirely wrong. My truth is beyond reproach to me (just kidding). But that’s what the word latent means: not being in a state of use, currently, but with the capability of expressing, fully. I believe in the latent abilities of our species. I have great hope in this latency. Latency, when expressively realized is a marvelous thing to witness, just ask all those nameless soldiers about their art. We are capable of movement. Not in a “pick yourself up by your bootstraps” kind of way, but with help and support. Sometimes, oftentimes, we are not strong enough to do it on our own. We know we can, but we don’t believe it until someone else does too – or puts it into words. We rely on each other for movement, just as we rely on the Earth for its gravity and the wind for our flight.

I have great hope in potential. We have the potential to be pillars and posts, foundations and superstructures, just an arm to lean on, or a shoulder to cry on. We can be anything, to anyone, even if it is in our own reality. We can embody hope. We can exude hope. We can be the sericeous leaves that drip the ambrosia of salvation. I don’t know how to save anyone from their torment. I can only pick up a water jug just out of reach. I can only listen to the vet and not speak (for once, haha). I can only stand up for myself, when the affliction of another is just too overwhelming, even as I remain chained in my hospital bed. I can only come to the tragic realization that I cannot help the old man who was being abused by his wife. Because, after all, I am no one. I am nothing. I’m just me. In me is the potential for salvation, but life is never black and white, nor night and day. Life is almost always shades of gray. So I take the pain of my soul in chains and I break the shackles around my neck and feet. I want to see. I want to stare into the light and burn my irises away. I want to see the tragedy of the true forms my fantasies are made out of and slowly chip away with my spoon, the bricks that I’ve carefully laid around me to protect myself from reality – some truth. I want to walk into the light and contemplate the seasons, but then, I want to stare at the sun and I want to see beyond the sun. Plato made the claim that it was not possible, since we are bound to the human body that is limited by the senses. Then how far can my soul escape on Icarus-wings? Would I see the light that exists beyond the only light we know? Would I stare into the darkness and finally see into its eyes as it stares back into me? Demons don’t scare me. The hell that is here on Earth, does. That is why I hope.

I hope because I am no one. I hope because I am every one. I always had the latent potential to illuminate, and bring hope, but I don’t want to miss the opportunity to stress the point of this blog: cling to hope and glue it to every fabric of your being. If I am to be devoured by demons or the hell that is here on Earth, I will not be found without hope. I don’t just want to be a fire.

Forgive the garrulous voice that penned this post but…

I want to be the luciferous one: the one who brings light and illuminates.





Day +3: I am no one. I am nothing.


I hold in one hand all the things I’ve lost to this disease and I remember how depressed I was when I had to face horrible decisions on my own and then I think to myself: this cursed blood should never be passed on. Every trace of it must be eradicated from the genetic pool. This blight upon the earth that saps the world of normalcy and sinks more and more innocents into despair. I cannot even judge them for wanting to die, for not wanting to be addicts and pill seekers, and for being failures in their lives. The curse of this blood is greater than it’s worth and I am willing to make any sacrifice to rid myself of this disease short of cutting my skin and letting it all bleed out. So all of the things I’ve lost have been in a war – my war. Who remembers the tears shed on the battlefield alone? When all around you, your comrades are being consumed by the same devastation and great mortars shoot endless rounds that pierce skin, muscle, bones, and even the soul. We come out of the war either dead or sinking towards oblivion, alive.

It disgusts me that we ask these soldiers how much pain medication they’ve been taking. As if the bottom line was to stop the opioid epidemic dead in its tracks by making sure that everyone of them has just enough relief to not have enough relief. As if the war was against the drug, and as peddlers, we had to be responsible to cure and heal just enough, but not too much – and certainly not all at once.

It disgusts me that the pain scale is idiocy given form. How can we act like numbers are relevant and as if pain had a quantitative measure? It disgusts me that the scale is nothing but a lie, a story to tell to fit a narrative. Veterans of the war generate numbers like oracles as if to correlate and affirm the validity of that other set of numbers that reveal lies and truth (hemoglobin etc). Then when the numbers don’t match, the healthcare worker, novices and veterans in their own battle, are lost in lie and truth. What to believe? Who to believe? Numbers? The living organism? More often than not, numbers rule supreme, and once faith is lost in one living organism, faith is lost in all. How easily we can chip away at someone else’s humanity!

The soldier seeking temporary euphoria, a dance with the devil in the pale moonlight that no one can understand, easily gives up the cause and the battle is lost for all. Just as we create, so too we destroy.

Soldiers. Healthcare workers. Patients.

We create each other. We breed and foster disbelief. The system is broken because we broke it. The system is broken because we started out with inferior monitoring methodologies. The system is broken because we never really understood pain and we never ever knew the kind of pain other human beings were in. I’d be the first to admit that fact.

So we turn to fear. Fear is effortless. Fear is blind. Fear keeps the soldier writhing in pain afraid to press the PCA button because the nurses will come in an hour to make a note of how much medicine he used. Fear creates its own narrative: a story that is like an essay, with a beginning, middle, and end. Fear is so powerful that fighting the fear and asking for help is its own battle. What a degrading feeling, to be reduced to something you are not, anymore.

I am no longer a drug addict. How long I’ve preached a judicious approach to the mental control of mind altering drugs to masses of patients whose pain I never knew or understood despite being on the same battlefield with them and fighting the same war with them, I can’t even remember anymore. I am no longer a victim of my own body, but then the very thing that was supposed to rescue me from this cursed blood returned me back to the familiar battle grounds of pain once again. I entered so blind and carefree, unwilling to think of this as just another battle in a long long war, but I returned to earth so very quickly. All of a sudden I was sleeping longer than I was awake, subjugated by some pain or the other, somewhere, for some reason; no one could explain exactly. I was happiest when someone else pressed that cursed button for me.

Please. Don’t leave the choice to me.

I barely would hold that thing in my hand for longer than a second. I didn’t want to have anything to do with it anymore. Forevermore. What a curse it is to have to tremble and shiver from within, to make a simple choice. A choice that frees you from pain, temporarily. A sanctioned choice.

But its easy for everyone else to press that button for me. It’s a matter of empathy or sympathy. Wrapped in their own struggle of witnessing my struggle, the choice for them is as easy as traveling from point A to point B. For me the kiss of the phobia is real in images that haunt me and dehumanize me. I am always less than. I am always just another case of the disease. I am always just a victim of the stigma…perhaps, only in my head.

But these imaginary evils, as real as they are, are testaments of the fact that the world outside these walls and the world inside are not separated by any lines. People here are the same as anywhere else. We are simply, cruelly, victims…and simply, cruelly, create victims in return.

Have you met these soldiers? Some of them are incredible and have done incredible things. Some of them are writers, artists, performers…talented…unique. It wouldn’t matter what title or respect they hold, stigma always overwhelms. It transforms even the greatest, purest soul, with its dark mire. It ekes through the walls of the creature and eats away until there’s nothing left. Sad isn’t it? That we are nothing. That we’ve always been nothing. Hopelessly helpless and reliant on others for relief. I’d have sooner ripped the PICC line from my arm and torn the port from my chest than subjected myself to the endless torment of hopelessly broken pain management. I’d sooner have suffered in a sea of unending turmoil than allowed myself to be reduced to something less than me just in passing comment, just in derogatory tone, and just in words that so effortlessly issue forth from lips that mostly never stared down the great beast of pain and won, time and time again. No one was there when I gave up my pain medication earlier than I should’ve. No one was there when I allowed myself to be consumed by withdrawal time and time again. No one was there when I continually quit cold turkey, shivered for days on end, and turned my pillow over and over drenching it in sweat and insomnia. Because it was that endless fear that I was afraid of…the phobia is real. Ive been trying for so long to prove that I had overcome the affliction that my affliction had forced upon me, that I was no addict, and that I was no creature that the very system I turned to for healing, instead, like mad scientists in a mad laboratory, created through indifference and an education that was never enough.

Fear is effortless. Fear is blind. Not enough pain medication. Too much pain medication. This has to stop. It had to stop for me. The road to normalcy cost me more than I wanted to give up. In the end, even at the finish line, it still managed to take, and take…and take.

When people come to me in hope that I understand their pain, my heart breaks and shatters into a thousand pieces over and over again. Even I, don’t understand pain. Even I, will never be able to understand pain.

All I hope is for this conflict to end. This needless war that we fight within ourselves. Trying to prove our worth, as if we have to be worthy to be free from pain for a minute…15 minutes: that’s how long the pain meds worked when I began to have immense, firey pain in my throat from mucositis. After years of not being too smart or too intelligent in front of the nurses and doctors, to protect myself from judgment because of just one line a Resident uttered to me once, in passing.. “Knowledge doesn’t make you any less of an addict,” I ran away. Then my fear was no longer effortless. My fear was no longer blind. Finally I understood that I was nobody. I was nothing. I did not have to earnestly impress upon others that I was educated, careful about my choices, and that I was always, continuously turning things over in my head…weighing my choices more than they’d ever know or understand.

In the end, this is not my story. This is just one story.

In the end, I run frightened and scared away from the hospital, because the same question, in the 5 minutes that it takes to take stock of “how I’m doing that day,” is repeated every day. It takes longer to justify my drug use than it does to explain the complexities of my condition. It takes longer to defend myself, than it does to help educate and reinforce the system of education.

The system is broken, but I’m not going to fix it. The phobia is too real. It is a greater torment than Scylla or Charybdis. When people talk to me about eternal damnation, I never say this out loud, but I’d willingly offer up my soul to the demon of endless pain than to be dehumanized daily and reduced to something less than “me.”

The only reason I returned to the battlefield once more was to run away. I didn’t come to run away from my pain, I came to run away from the system. It’s not my job to fix it, but I want to have nothing to do with any more.

Even though my fear is not effortless and it is not blind, I am nothing. I am nobody. I am no one.



Day -2: Factions of Co-Band Personalities

CobandsIt’s funny isn’t it, how I should actually start by apologizing for missing quite a few posts, but the oracular hallucinations that wake me up in starts like nightmarish soliloquy’s to my waking self, continually oscillate in harmonic resonance? I am sorry, but I promise the next few entries will vindicate my absence.

I’m draped in colors, willingly festive unlike my deep-seeded desire to evade all the colors that fly about during the Indian festival of Holi. Compression Bandages, when I first discovered their self-adhering qualities in myriad conversations with light, made me search for them at my home Walgreen’s only to find them missing from the vast fields of curatives. I find myself a spectator to an interesting phenomenon: rival factions of nurses and their contrasting theories on acceptable co-band application practices. As you can see from the featured image, some nurses believe that co-bands (the blue ones on my right arm), like their name-sake, were meant to be nice, snug, and tight to the fit. The rival group believes that the assignation is a recommendation and a smaller subset of this group believes that they fulfill their task with a serious commitment to duty even when they are lightly wrapped (the red ones on my left arm).

If you’d ask the nurses about their thoughts on this matter, they may be taken by surprise. In college, I scampered about strange ecological domains collecting data through leaky canopies and painted gold-glossed fields on natural botanicals and the creatures that inhabit marked field-study squares. The truth is, if I’d stopped to ask the garter snakes that crossed the nature-cut trail-ways about their thoughts on their behavior (assuming this world is similar to Gaiman’s American Gods), they would also be taken by surprise. A lot of our behavior, until we actually put it in words, operates on a subliminal level. So while one nurse undid her predecessor’s co-bands, another would tighten them. Silently they fought a war against a rival faction that they were not even aware existed. Steadily holding the fort, they are locked in eternal oscillation chanting war-songs of different tribes:

“Claw to carry you!”

“Claw to crush you!”

With indecisive colors as banner and boon, the battlefield is constantly aflame. It sighs and whimpers as a change in the color-guard approaches: “It was fun until it got itchy.”


Day -4: They Say the Sun Rises, Again


Part of me wants to give more of myself to the world in the walls. Opaque and blissful, imaginary wallflowers tow the line between release and restraint. In conversation with them, they emerge and grow up above me. They surround me in Gothic ivy lace and spectacles of riveted chambers as if the lesson that we learned from the Great Wars was that there was no point in being neat and tidy.  It takes grit, determination, and all those hardened, inspiring words crave images of rust and dust – anything but chenille panoply and visions of buds yearning to burst free from the restrained luminosity of anything relegated to the term “opaque.”

Perhaps, and I only just noticed this, I am not as good as I thought I was, in conversation. The rhetoric that fills me and weighs me down is aggravating because it is a prison within itself. The words that want to burgeon forth, instead, fill up all the empty space around me and vaporize leaving behind not even a simulacrum of the image they represent. But it seems, in images and words, the communiques that matter most barely pass off as communication. The grunting and head-nodding, the placating stares that ask you to “just be,” to remain, as you were, where you are – all imply that something is yet to come. I was struck by this truth, only after being hit on the head with it: here is not there and though here is also there, there is where life is, after you escape from here.

There’s a feeling here that is somehow commonplace, but easily overlooked: things are different and perhaps unnoticeable once the initial shock of the stark difference fades. As if one is rising up towards an incandescent halo in the sky, the blinding light proclaims a hallowed difference from the land of the world below. In Japanese, the romanized word is “jigoku,” but it is not a hell like we are won’t to paint so quickly in our heads. There, where the float-pool nurses are tossed about mercilessly between sometimes as many as a dozen different patients, and the names of the inmates are reduced to features of disfiguration and malformity, is jigoku. Here is where inmates wrestle with the morality and ethics of subjugating those consumed by the flames of a living jigoku and grapple with the heart-wrenching question: how much do we pay for freedom from the flesh?

In the end, I fail again, in conversation. It is supposedly easy enough to pass off communication through the vice of imaginary language, but there’s something missing. What is the buffer between the ivy up above, the hell of a prison out there somewhere, and life that is supposedly happening everywhere?

The sun, they say…rises again.

Musings, Recollections

Day -6: The Demise of Oblivion and Charity’s Child

If I was asked in all those many moments before the transplant, to describe pain in its forms most chaotic and wonderful, there would have been a part of me that felt strangled by the limitation of translation. To adjust for this built-in failure of comprehension, is a series of performance metrics as my Kittu Uncle reminded me when he visited me with my cousin (on his birthday, mind you) who I had not seen in quite a few months. The performance metrics by which I could judge the state of being, Cartesian or otherwise, are all rather simple and meant not to strive for great insight, but to bridge the blank stares of a row of familiar-faced doctors with an even more vacant facial impression of the same inmate in 3-2440. And yet, lost in the innocuously muddled words with which we try to force out our existence into easily translatable, comprehensible lingo is the slow advance of biology responding to the charity of technological manipulation. The PICC line in my left hand leaves me nervous and agitated during the early morning hours and the slow burn that has not left the IV access on my right, like twin stampeding horses, awaken before I do, well before the obligatory 5 AM vitals, labs, and data reconciliation.

I am waiting, like a maiden of yore, glued with her sextant and compass to the endless bleak-skied horizon for a glimpse of torn red-and-white cloth. I am waiting for some symbol, some small harbinger of hope that will justify even the worst news possible to release me to the bosom of knowing something rather than waiting for the sea of possibilities to swallow me whole. After all, doesn’t charity’s child ultimately deserve to sink slowly over the edge of the flat world and discover for himself that where he began was filled with lies; that the truth about the biological condition was simply that it was too unruly, still, to be manipulated fully; and that now, finally, those victim to the consequences of choices they never made, can see the broken-masts in the water and know finally that the demise of oblivion is here. With brute force data, labs, and a burn that begins to consume me from inside, I order yet another breakfast, knowing that just beyond hence lies a different kind of pain: one that is integral to salvation.