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.

 

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3 thoughts on “Day +3: I am no one. I am nothing.”

  1. Dear brother Kirti, dear Valiant For Truth, dear Helpful, dear Faithful, goodmorning. (Thankyou for your patience with my ongoing imagination).
    As I read your writing “musings” I was very touched, even personally, thinking on some smaller first-hand experiences Concerning humanity, pain, heart, and broken systems…broken systems everywhere. I have beloved ones in these broken systems. Which i too have needed, and as my heart resisted, my physical body demanded of it so i unwillfully draged my feet into the broken system. I too have humbled my self as we see God work great things through the broken systems. Not my choice road, but never the less my road…as I understood more an more, darkness Cannot conquer the Light.
    Even when we can’t see the changes in the broken systems, sowing seeds, as you are doing, in love and truth are helpful an powerful….touching the core of the hearts.
    There is a greater government, isaiah 9:6, a system that is not broken….an that’s why our hope is not crushed, our hearts can be healed, our head can be lifted each new day….and though we are in the systems, the systems can have moments of blessedness flowing through them. Yet truth spoken, the systems are broken….May we look to the one who is higher than these broken systems.
    Thank you for heart and truth dear brother.

    HE makes me sing on the battlefield.
    HE makes me dance through these tears.
    HE Graces my heart to believe again.

    Liked by 2 people

  2. You are so special Kirti! Everything you are going through will definitely help another person. This blog/ this post is something I feel sickle cell patients have always felt and try to say. Your words, really make people understand. Hopefully one day, we can stop this cycle of suffering. Thinking of you! Praying for you!

    Liked by 2 people

    1. Aw Marjorie! I am eternally grateful and deeply honored to be in your prayers. Thank you from the bottom of my heart. Yes, they were words that needed to be said, so that I could say, what I wanted to say next. Hope you enjoy it.

      Like

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