Musings

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.

Musings

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.

 

 

 

Musings

Day +3: I am no one. I am nothing.

Ok

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.

 

Recollections

Day 0: Unexpected Ways to Celebrate Rebirth

Neets Graduated Med School Woo
Sharp as sharp can be and donning that Doctorate degree. Nitin (right) will be a (Dr.) soon too!

There was only one stipulation – a point of no-contention – by which the pertinacious reed of my will would give itself over to the annals of science: The transplant would have to wait until my sister graduated Medical School. I had been vigilant by the sloping banks of an erratic on-demand schedule and grit my teeth when I had to make accommodations. I always tried to apple-polish my way to May 12th to remind my transplant team that they had indeed, at one point, agreed and therefore, there was no going back on their word. For a few tumultuous days, doubt crept into family discussions, poisoning the waters of firm will and resolution. As the initial conflagration gave way to embers, we had all transformed into hirelings, eager for the fruits of our labor to manifest in wage, recycling days and incapable of separating one from the other. Soon, a few weeks before the appointed date, like all events in the family of import, the thrall of fervor had ignited our passions with a bright flame. We marched towards the dying sun eager to see family and friends in the glorious sun-bleached land of Las Vegas.

Woo yea
Graduated Med School Yea!

This story had to begin here because we had not realized it until her name was called on stage: in front of us, a new creature shook off the ashes of her old life and was reborn as  a sibylline baby bird, which revealed in oracles, the birth of itself. The phoenix was no mirage and no simulacrum: it was what she had always promised she was and was going to be.

Congratulations Dr. Neethi Dasu
Dr. Neethi Dasu

Somewhere along the line, in uncountable days, perhaps watching too closely or not watching at all, we had failed to replace the image of the little girl of many years hence. Fiesty, vivacious, and ever attracted to the sun, as if she was its only parhelion, we had taken for granted the transformative power of fiery testing crucibles. Somewhere along the line she had gone to war against herself and she had come back with the Gorgon’s head emblazoned on her chest as aegis. So as she was enrobed with a title of honor, a title that meant something, we could no longer ignore the baby phoenix. With misty eyes and heartfelt “started from the bottom…now we here!” chants, I could feel a recognizable pride well up within me. After all, wasn’t I the one who had been closest to her and had been there to see most of what my family had not seen? And yet, this unveiling was as new to me as it was to everyone else.

That Vegas Sun
Take 1: That Sun that Bleaches all Bones. Well we tried. Selfie 0 – 1 Vegas Sun

 

In the Car Vegas 2017 Neets Graduation
At least it’s cool enough in here to take a pic.

This Scylla violently lashed out against me. I remember being trampled underfoot by its overwhelming grip, until I realized that just as the phoenix is born through the sum of many pointless, irrelevant, mostly forgotten days as tiresome and testy as they were, we were not getting through the short 3-day weekend without a great push of perseverance. It was no easy task managing family and friends, especially when they were both on opposite sides of Vegas. The zephyr’s that came down from an always forgiving sky, perhaps in acknowledgement of the baby phoenix parhelion who was driving us around at pace here and there, gifted balls of energy that we did not have. Perhaps in recognition of an ashy rebirth, the sun forgave our sins in the desert and we somehow made it to the airport just barely, on time.

Nitin and I in Vegas Waiting for Neets to get her Hair Done
Hello Vegas! My cousin Nitin and I wait for Neet’s to get her hair done before Graduation.

I remember passing out without packing for the 6 am flight the next day: there is no Scylla without Charybdis. The great maelstrom heaves and puffs like a creature of torment, blasting from its whirling nostrils molten snot that singes the water and burns black bellowing wisps into the sky of perdition. All that lies ahead is uncertainty. All that lies before it is doom. In truth, for anyone who has been stuck between the devil and the deep blue sea, there is no lesser of two evils. Like a venomous, uncontrollable ritual, we are channeled by the overwhelming peristalsis, all in single file, through the hell-mouth of choice and imperceptible logic. Moving steadily from one point to the next, as much as we like to believe that choice dictates, the consumed eke through the bowels of a greater salvation, consuming to be consumed.

Headache but, Let's Pose for a pic
Headache but let’s pose for a pic! Gosh I look tragic!

Max Weber believed that tall-poppy syndrome was a zero-sum game. Let me be the first to say, I don’t care, because the frailty of the human form is not limited to its biology. Somewhere along the line, the great terrors that manifest in my head as mythical creatures dissolved in the rhythm of perpetual motion. One step in front of the other, whether on Pelotons or $10/month gym-membership stationary bikes, we are moving forward, a la Red Queen, because that’s all we can do. I am more than willing to give up my share of prestige to save the neck of a high achiever who truly deserves it. I don’t think it’s my humility, but instead, my needless commitment to logic that brings me to this conclusion. After all, how can I not look at Scylla behind me enslaved by the immortal will of the fire princess, the absurd hero that refuses the rock of her imprisonment and continually overcomes her fate by giving in to it, and not be awed? German Satirist Dieter Nuhr astutely recognized the fallacy of humanity: most of what we believe to be acceptable behavior is nothing but a social construct. Social constructs, like the word implies, are imaginary and so as the days passed by leading up to today, all I could think was: “Where is Charybdis?” and “What happened to Scylla?” It is the frailty of the mind that prints recognizable images upon the interpretations of the stress its biology must endure. For better or worse, whilst everything was happening, it seemed liked nothing at all was happening until I ended up in the ICU the day before my transplant.

Chai Amar Neets Varun Dad - Copy
The ICU, with friends.

I have to give a special thank you to Varun, Chai, Amar, Neets, and my parents who helped me make it out of the ICU as I suffered through serial migraines. The headaches were bad enough that I resolved to crawl through them on my hands and knees, if my Dad’s head massages did not work. The one thing I remember yelling at the void was: “Don’t you take my mind from me, cursed Charybdis! Take anything else but the vehicle of my being!” Perhaps this is why Odysseus found Scylla the lesser of the two beasts. The headaches were debilitating and they shut me out of the greater world. I was not able to work. I was not able to think. I was not able to write.

Receiving some OMM treatment
Maybe some OMM will help the headaches?

After some revitalization, I normally sprang back up to my usual self unlike what most of these pictures portray. It always perks me up to indulge in philosophical banter, and I was blessed to experience the terrain before me without angst or concern for the big day that loomed, mired in uncertainty more than surety. I am eternally grateful to Chai and Varun for their help and assistance in moving me back from the ICU to my own room.

And…Voila!

Missed the Transplant Mostly Sidelined with a Headache
The peristalsis of life: juxtaposing the present and the future in one image.

I don’t think I even saw the cells in the bags that were being transfused. I heard the fuss around me as pangs of pain shot through my head: “It’s so clear! We can’t even see them!” Indeed it was a sight to behold. Both my veteran transplant nurses Ufouma and Rahel (seen above) had never seen such a clear bag of modified stem cells. This story is worth telling so I will segway for a quick minute.

My Ball and Chain
Oh sweet ball and chain, how like medusa you grow and shrink everyday!

During the transplant build-up phase, I became the first patient on the protocol to try a new drug that released the stem-cells into the bloodstream so that they could be collected via apheresis. The significance of this revelation meant widespread changes in the protocol such that all the transplant patients after me (I’m sorry!) had to wait a few more months for the protocol to be amended to include this wondrous contribution to their quality of life (You’re welcome!). On average, bone-marrow harvests yield 3-6 million cells (Forgive me if the numbers aren’t exact, I’d appreciate any and all fact-checking as long as it’s correct!). The first time they used the drug to collect them via apheresis, my yield was 11 million. Not only did they receive more than enough, but the number of viral copies for transplant ended up being ~5+. On all the protocols including the original French clinical trial, this was the first time they received such astounding numbers on both fronts. This high yield is quite possibly the reason for the clarity of the cells (most other cells with lower yields tend to be yellowish in color). But the reason why I pushed fervently to get this format of stem-cell collection included on the protocol was because: no more painful, nasty, horrible, bone-drilling stem-cell harvests! Not only is the yield higher, but you also don’t have to deal with the pain? “Sign me up!” is what I hoped the future transplant patients would say! I was immensely annoyed when they told me that I had to wait a few months till the protocol was amended to include this test drug, but after going through all the bone marrow harvests/biopsies AND going through the apheresis harvest, I’m happy I waited!

Mom Rubbing My Head - Crazy Cluster Headache
Mother tending to my head as I (still) miss the transplant.

I remember thinking to myself: “Isn’t it ironic?” First I get caught up in a fainting spell which leads to a code being called on me. Then I awake in an ICU and have a great time relaxing the day before my transplant. On the day of my transplant, I’m fully functional and immersed in conversation and the generosity of friends who traveled all the way from NYC to see me. Then, when the big moment arrives, I am sidelined once again by a headache so annoying that I only squint at the goings-on around me and do not even get to see the cells that would ignite a rebirth within me. Just as the small bags quickly infuse into me through gravity’s pull alone, the headache begins to slowly fade and I feel the cells overwhelm my bones as they rush into my sternum and ribs. At first the feeling is warm but quickly turns into unease. I think to myself: “Oh God I’m going to die! It’s too fast! It’s too much!” The swarming cells make me feel like I can’t breathe and I’m afraid to complain to my nurses but I let them know anyway. They slow the infusion down with the second bag and I feel much better.

Transplant Day Hanging with Ufouma Rahel, Varun Chai Amar Neets and Mom and Dad
That’s it? I thought there was more to it…

They had warned us that the transplant was no grand event. It was fairly innocuous and not worthy of much fanfare. We had not planned anything and honestly, the day was only made quite special because of Varun, Chai, Amar, Neethi, Mom, and Dad. I did not expect anyone to be there, but I am, from the bottom of my heart, truly grateful for everyone who was there with me on transplant day.

Healthy Red Blood Cell, Mom, Dad, Neets, and Me
Family Pic Post-Transplant Celebrating the Reborn Red Blood Cell who will be Sickled no more! ¡Viva la Revolución!

Thank you for the very cute Whole Red Blood Cell. It is indeed a very apt avatar of the reborn me! I couldn’t feel anything but happiness. I was glad to get it over and done with not because I was waiting eagerly in anticipation while counting down the days, but because my parents were waiting eagerly in anticipation as they counted down the days. I was happy that it was low-key because that’s how I am. It reflected my character more than I could reproduce for you here, in images and words. As a lonely solipsist, I was happy to, finally, see the weight fall off my parents’ minds. It had harangued and plagued them for so long that I felt happy for them more than I did for myself. Perhaps somewhere in that reflection is the seed of the new rebirth just as all those multicolored days led to my sister becoming a doctor. The colors of the day were pastels, but in memories and recollections now, they appear to me in a roseate light.

In all honesty, the only colors that mattered that day were the colors of FERRERO ROCHER!

Ferrero Chocolates to Celebrate a Succesful Transplant - Copy
A Toast!

Just as I thought that there was no other way to celebrate a new birthday, except through card games, word games, and lots and lots of chocolates, the nurses of the transplant wing, with Ufouma as vanguard, sing me happy birthday, present me with a rich chocolate cake and insist that I celebrate two birthdays a year!

Awesome Transplant Day Surprise Birthday Cake
What a sweet gesture! Pun intended!

I am presented with gifts and I am presented with indescribable emotions. Many, many thanks (again) to Amar, my sister Neethi, Varun, and Chai who went over and beyond my limited imagination and ignited a joy I did not expect to feel – for myself. Somehow through all of their generosity, I found myself happy to be, a la Descartes. Somewhere along the line, all the confusion evaporated and revealed the clarity beneath. For someone who had been toiling with the quandaries of the mind, the iniquities of the soul, the trepidation’s of humanity, the ages of decay, and the cycles of white-washed days, I was jump-started and finally awakened, slowly, to a new waking life.

 

Transplant Day Gifts! Healthy Red Blood Cell and an Amazing Book
Gifts too? You were all too kind!

I am not one who invests much stock in surprises, but on this day, it was the unusual mix of unexpected events that truly elevated my spirit. There could not have been a more joyous occasion. In the unexpected, I found a reason to smile.

I am beside myself in awe of the many ways I got to celebrate a day I thought would be lost in uniformity.

Recollections

Day -1: The Familiar Scenery of Ethereal Projection

I had a wonderful and much-needed excursion away from my room. For many many days, the one major recommendation from all the nurses, spiritual guides, and assorted friends (calling them staff would be sad) was: “Get up and out and about!” I wholeheartedly embraced this sentiment with gusto and a reverence for a truth that revealed itself to them through experience.

Where they house the Phototoxics
Where they keep the Phototoxics (jk)…and my sister.

We found some marvelous places around the NIH: ornate alleyways leading to glass-walled enclosures that reminded me of carefully gardened British properties; a multi-purpose court for Basketball (with hoops!) and Tennis; intriguing Lipsett Amphitheater displays; and many, many opened doors down abandoned pathways. It was as if the sages were right: all that was before us, was ours (not to mention when it’s that time of day when it feels like there is no one around anywhere). In the beginning I was caught by an eerie primordial feeling. I joked with my sister as if to willfully stymie the thought that the herds have disappeared and that there was probably a very good reason. Somewhere out in the fields, danger was looming, but we traipsed along pleasantly amused that there was almost no door that was locked and even though I felt a growing fatigue, I filed the warning away under the folder that I refuse to open until it opens itself: “Chemo.”

In “The Pyramid at the End of the World,” The Doctor puts it quite aptly:

The end of your life is already begun. There is a last place you will ever go, a last door you will ever walk through, a last sight you will ever see. And every step you ever take is moving you closer. The end of the world is a billion, billion tiny moments. And somewhere, unnoticed, in silence or in darkness, it has already begun.

I joked with my sister about the fact that before I knew about the fact that the cardinal directions at the NIH broke down further into sub-cardinal directions, I confidently walked into a door without looking at the signs, and found myself in an ICU. The joke was, save for that one funny experience, I’ve never ever entered an ICU in such a pleasant manner: on my own two feet, listening to my tunes. Somewhere, unnoticed, in the quiet halls and empty glass structures, it had already begun. I had been struggling with the fact that I had overestimated my energy level and perhaps should have considered opening the folder called “Chemo” in my head. At least then I would have considered the warning. The fact that it was hot and heavy outside did not help since both of them (Temperature and Air Pressure) are triggers for a syncope-like state which I fondly call “Ethereal Projection.” As I struggled to find a cool place inside and rest, I was breathing heavy and perspiring a great deal. We tried to hurry back to the unit, but near some abandoned elevator, the air was even more stifling and the lack of oxygen quickly wore me down to the ground. There I lay, gasping for the cool kiss of air close to the surface of the earth as my sister frantically began to panic. She started to look around and saw a wheelchair just a few yards from where I was certainly, quite a sight to behold I’m sure. I returned to the same place I’d always gone when such an event had occurred: the familiar scenery of a world that I simply could not interact with. As my sister tried to converse with me, I remember saying words that I simply did not say: “Just leave me here for a bit. I’ll be okay.” She was worried that people walking by would surely not allow me to stay passed-out on the floor, and I couldn’t awaken to calm her down and alleviate her fears, because, as The Doctor said, a careful sequence of events had already been set into motion and gone completely unnoticed. Somehow, right there in that location where she found a miraculous God-sent wheelchair, along comes a stranger much to my chagrin. I hear footsteps approach and all the pleading while in my highly conversational non-conversation with my environment, does not stop his advance. He calls to me by my name and says: “It’s me. Primary Investigator, Dr. Tisdale.”

I’d like to pause here and give a small shout-out to oracular hallucinations, the red string of fate, the world of the here and the world of the there, the sun that separates the hell in here from the hell out there, and the dementia of the me in conversation with myself. I did promise harmonic oscillation, and I’m astounded just how incredibly well, the sequence of events as outlined in poetry and prose through these entries, managed to keep that promise. It was as if I was foretelling my own story, and as I yelled at people in my head to leave me alone and stop stabbing my sternum endlessly, I was ushered back into the ICU, trapped once again in the familiar scenery of ethereal projection.

The hard work of getting me to an acceptable condition was handled by a mass of nameless voices and Gloria, my ICU nurse. When I awoke later near the end of her shift, I was happy to tell her about CENTRAL. One of Peru’s premier foodie destinations featured on Chef’s Table. That night, before my transplant, I had the pleasure of chillin’ with #bestnurseever. This picture was only taken under the assumption that I address her by this title, so shout out to Marjorie!

Marjorie
Marjorie aka #bestnurseever

So it is indeed true that I had a much-needed and wonderful excursion from my room. I just want to add that it was to the ICU. The restorative power of Marjorie’s (and Gloria’s) intriguing conversations was exactly what I needed to break free from the voice in my head. I found myself on the brink of Day 0, free from shackles that I never even knew I had. Oh how ironically I must’ve laughed at myself from the familiar scenery of ethereal projection! At least, this time, in this ICU, I was not intubated for no reason at all.

Musings

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.”

Recollections

Day -3: An Affair with Honesty

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It is no secret now I’m sure, after the last few posts, that I revel in the pompous pea-cocking denotive of one who enjoys taking veiled moon-shots. After trying to describe the difference between the true weight of important matters of the mind to my sister who sits but a foot away from me as she works on the aesthetics of the blog,  she brings me to the realization that the quandary I face is not one of existentialism. In response, I offered, as I had initially suggested I would, a straight-laced account of the day-to-day account of Patient X. There have been many requests that have simply not been addressed thanks to the format and the style in which, as my Mother termed it, convolution replaced clarity here. So I decided to change the rule book and finally have an affair with honesty.

In my mind this tale was not worth telling, which is why I strayed down the strange broken-buttress filled pathways seldom few recognized and even fewer understood. But after seeing and hearing the overwhelming responses from hearts that I simply cannot ignore anymore, I will begin the tale exactly where it was supposed to have begun for me: in my mother’s womb. I jest. It was actually the red string of fate that brought me a small dual-toned pamphlet that simmered for a few days untouched by my bedside on squeaking clock-like reminders from my mother. “Did you see the pamphlet?” She repeated, usually annoyed that I still had not even touched it. What could it possibly offer me that I could not easily pass off as useless? Would it not have been a pointless investment of time, to consider yet another clinical trial or treatment option?

When I recounted this story to my nurse in the wee hours of the morning, it appeared quite funny to me. After all, my Mother had found the pamphlet for the Autologous Stem Cell Trial here at the NIH in my own Doctor’s office. For once I could not chide her foraging behavior. For once, it all happened just as it was supposed to happen. I don’t even recall when I did it, but I wrote an email and within a few days received an older version of the protocol (which we have since, together, worked on changing for the better) which brought me to today.

As much as any other protocol, treatment regimen, and possibility of rescue from this disease, this was the only one meant for me. It was meant for me because somewhere in the sylph-drenched oceans beneath Yggdrasil, my brother Anup, in a prelude to salvation stirs sweetly in memories where he plays on honeyed trees. This was the only possibility for me because only I could have been the seed of ouroboros for me: an auto-logous reincarnation. I hope one day, that my sister awakens in her own cycle of rebirth and together, we’d finally have the definitive nocturne to underline – the song that preserves in amber, the golden sacrament of trauma turned free.

The Chinese myth of the red string of fate is analogous in many texts to an indefatigable super-power: a will greater than can be conjured from the ground. However, in an effort to romance the truth I begin this story by saying: it just all happened as if it was meant to be.