The impossible life of a perky patient

 It was never going to be easy removing years from the mind that had occurred before the birth of the patient. There were no memories to extract because spurious humans living in pseudo manufactured realities are bombarded with fake data from all sides. With the failure of dissociative drugs, it was decided to turn to philosophy.

 

Doubts were raised in the minds of the sufferer as to the concrete reality of the ill-fated disease of experiential nature with the awkwardness of the various occasions of sawing off tumours sprouting in every internal area of the body. The malady travelled through tissues and most organs as well… only rarely in the outer structure. The fateful time when blood pooled that they had worked their way through the inner organ system. The tumours simply returned but in another location of the organ system.

The unusual secret of the birth of the case was an eye-catching child was fond parents, who were lost in the thought without realising that behind the outer shell there might lurk some sickness never known to humanity and the ill-fated child would have to endure the worst in all walks of life and face countless challenges.

The patient found the only... defence against the indignities of manufactured pseudo-reality where sophisticated people were living in a very large version of Disneyland was freedom from fear.

Bogus humans with several charlatans made life not only a struggle but a fatal misdiagnosis of the sufferer.

Misdiagnosis is the bottom of the iceberg of patient safety and medical error.

Historically, in the mid-1700s, W. Hunter elaborated on the clinical characteristics and hemodynamics of peripheral (extra-cranial) arteriovenous malformations (Hunter, 1762).J.J. Plenck first described a cavernous angioma, which he called a ‘cavernoma’, in 1776. However, it was not until 1863 that Virchow recognized and differentiated essentially all the common types of intracranial vascular malformation: telangiectatic venous malformations, arterial malformations, arteriovenous malformations, and cystic angiomas (possibly, modern hemangioblastoma). 

The patient's brain tissues produced certain vessels, which tangled within themselves into a single egg-like tumour. The egg lodged in one of the major hemispheres in the brain for up till there was a burst of brain activity followed by a dramatic spike in the EEG. The patient's overstimulated portion of the brain, sending forth confusing commands to the diligent troops below after a traumatic event whence a crazy idea struck after persistent dreams that dreams have symbolic importance, there was apparently a profound desire in the subconscious of the patient manifesting in an unusual conscious power.

Shortly thereafter, the sufferer was noted to get spontaneous jerks resembling epileptic seizures. The patient's condition worsened to an uncanny degree. The surgeon took the tumour out with a pair of tongs. 

The subject eventually suffered a fatal stroke due to the rupture of the blood vessels and the historically uncommon bleeding. The patient's will helped the bodily organs to revive. The neurological mishap too corrected itself with the basic tool for survival namely courage.

The liver's red glare thereafter causing various deadly disorders was discovered by chance which duplicated all over the organ presenting pain in the upper abdomen leading to rupturing of the tumours and causing intense pain. The patient asked the attending medic for euthanasia and transplant was the only way out.

The surgeon identified the novel syndrome codified the compositional nature of the tumours thus confirming the diagnosis.

An efficient immune system would have rejected all encroaching organisms and toxins with amazing alacrity.

The transplanted liver needs the immune system to be suppressed so that it isn’t rejected like any pathogen. Which made the immune system low to the point to give the patient resistant tuberculosis.

Drastic treatment measures were implemented which had made almost no progress when a specialist quickly related the cause to effect when a mass illegally harvested inside the brain of the patient.

It was a parody when another mass was illegally cultivated on top of the kidney, a Ga-DOTANOC PET-CT based SSTR imaging because VHL syndrome associated hemangioblastomas frequently express SSTR confirmed that the floating lights in the patient's brain are hemangioblastomas. With this, the true nature could be seen and the diagnosis was confirmed.

There were few more masses destroyed by weapons of mass destruction. After the vandalism, the effects of radiation the patient had observed was similar to  Hiroshima and Nagasaki. Blood and nutrients could not travel to the brain like before.

The eyes seemed to convey melancholy wisdom when lightning travelled through them and the eyes stared skywards as if heaven had shown itself in all its glory among the clouds.  A horrible battle raged throughout the victim's life and up till now, the serious topic has been survival.

More than two rare diseases have been found to coexist in her constitution, now another one made its lodging.

The medical men tried to drag the sufferer into the melancholia of the medical lore. Because the patient is a medical curiosity, medical personnel made exaggerated claims of their achievements and try to draw the victim into an unnecessary surgery which has a drastic and dramatic effect when a non-invasive procedure is preferred to preserve your life. They forget the medical profession is all about the preservation of life.

The subject chose a giant machine that enabled doctors to shoot the lightning causing agent.

It was followed by a pandemic infestation by a novel virus that claimed an enormous number of lives than any Historical War. It remains a medical mystery.

During which the patient found the human mind making the medical profession a horrible business.

The patient just told one of the nagging problems. The specialist answered it and disconnected from the call, others don't think even try to respond or co-operate, save a few old acquaintances who are familiar with the phenomenal struggle.

So, how to treat the outlandish diseases? The patient thought of talking to an experienced specialist, who turned out to be a sceptic to proclaim the veracity of scepticism as a philosophy of a vital topic. The refusal to perform a good deed implies lack greater knowledge perhaps like mosaicism of diseases or coexistence of rare diseases in one body for which science has got no cure.

His associate and all of the members of the gathering nonetheless as they say no, their balking and refusing brings it down to the dread of consequences because of their lack of confidence and knowledge.

. 

They think that the patient would cry, 

So few grains of happiness 

Measured against all dark

I have been the safest 

For nine months

As carefree as a lark

Their deeds are always small, and almost always unnoticed, unmarked by history. Their names are not remembered, nor are these credible humans expected their names to be remembered. The patient could see their genuineness in an odd way: not in their unwillingness to perform great heroic deeds but in their quiet refusals. In essence, they cannot be compelled to be what they are not.

Ultimately, the only antidote to reality-manipulation is good old-fashioned human heroism and that timeless vaccine of courage and resistance, of freedom from fear, of tirelessly enacting ---the quiet, precise, judicious exercise of integrity and care with no one there to see or cheer.

Images by Akash Sharma

Ailments of ego can never be treated

 There are manifold challenges of having a malady. If you have the most unusual diseases known to humankind it becomes a fateful condition where you can't afford to be ignorant and continue being tired if you desire quality and extension of your life. Knowledge is power, ignorance about your disease will lead you nowhere. I have come across a few such patients with inadequate and volatile knowledge and they haven't survived after the second surgery. Ah! Don't look at me in dismay! 

You always have a habit of putting it on the past life baggage but it's true that in every field of life, you enjoy the results of your work or suffer the results and you cannot escape it. This is your karma. You suffer or enjoy the results of your activities from time immemorial, but you can change the results of your karma and this change depends on the way you react. For every action, there is an equal and opposite reaction. What you are suffering is the karma of her past lives, it depends on your reaction towards your sufferings, how you are going to cope, get along, manage. 

Horror struck my life but there's no world for escapist and I never shuddered in fear. The doctor told me suavely about my menacing disease but I poked my old chronic illness abibibiliophoia and started acquiring knowledge and expanding my perspective.

Even superheroes can have unique diseases.

There will be an intense, sombre, indefatigable strife where you don't have to worry only about healing because recovery is a tough process that takes time and patience leaving scars behind but you have to bother about financial demands to get a proper diagnosis and the desirable treatment regime.

Few diseases of the present have little in common with the diseases of the past because of their rarity but like an owl, you have to pore over abstruse medical documents and make it your pastime with a great penchant for general science with an interest in medicine.

When you are bombarded with heavy-duty medical words of a mysterious sickness as your diagnosis by medical men who claim to possess full knowledge of those things don't become trifle too dreamy and treat their words as Gospels.

I think of the overwhelming despair of the medical practitioner roaring,

“You come and sit in my chair; let me go sit in your chair.”

Their impossibly bumptious opinionated ego deflates showing all the indications of superiority. He has earned his degree through remarkably well medical training going through the rigours of medical school, how can an inferior creature ask him questions?

This peculiar outbreak of blind rage and reprisal I faced in the unfunny days of my first brain tumour.

I spoke with authority because it was my body he would work upon and if he doesn't do a very careful job with his scalpel with full knowledge of what he was about to do then my fragile life bird would have flown away. I had the full right to know what was to be done to me.

After completing their medical degrees do they plunge into the world of unique diseases, keep themselves updated, keep track of all those maladies?

Oftentimes, I don't get dragged into the melancholia of the medical lore when I seek medical advice because if you stick with just one opinion it might result in hazardous effects or sorrowful tragedies.

When you are a medical curiosity, medical personnel make exaggerated claims of their achievements and try to draw you into an unnecessary surgery which has a drastic and dramatic effect when a non-invasive procedure is preferred to preserve your life. They forget the medical profession is all about the preservation of life. They wish to put you in cold storage because they might as well think if you go kaput you'd be useful when you are dead rather than alive because they want to make major advances by making unusual exploration and conquering certain strange and unusual diseases and reach unpredictable heights of fame.

So better not stare at them with stupefaction, even the most brilliant medical mind can make mistakes and it happened with me twice… when unwary, heedless surgeons worked for hours to save a patient's life, noted a minute detail but failed to test it for any further implications... next time it was when their negligence led to the other doctor saying "Everything is in God's hands" because they are not omniscient or omnipotent, they use their acquired knowledge and skills to save a life.

Surgeons must be very careful

When they take the knife!

Underneath their fine incisions

Stirs the Culprit —Life!- Emily Dickinson

My biggest gripe is still hope. My struggle gave birth to hope. I never uttered the word hopeless. Hope glimmered in my mind that better things are going to happen, they are always ahead waiting for me. I can get through the toughest of times. I faced every challenge that came my way with strength and hope. Hope will put me on the right path and carry me through to the end of the journey.

There was some confusion in the mind of an ego-preening medic about the brain tumours only I have been found to have in the country and I cleared it up thinking I would get some cheerful encouragement but I reeled in disbelief and utter disgust when after a few minutes I saw him blocking me off!

I forgot oil and water are not supposed to mix and I will never be accepted as a patient with brain tumours yet not brain-damaged with full thinking and analysing capacity who can understand things through reason.

What did you say? 

"Aha—you observant rascal. You are bonkers...are you crazy?"

 No, I am not. I keep myself well-informed so that I don't fall into the wrong hands. I love learning and gaining knowledge which brought in understanding, comprehension, a better grasp of my bizarre diseases, not to be afraid of death or lead an unlived life like a zombie.  Because in the end we only regret the chances we didn't take. Live life to the fullest and try bringing colour to my life. I feel alive, not just breathing. 

Your brain will literally change in chemical composition when you understand the monstrosity and the oddity of your disgraceful lingering illness. It has larger economic implications unless you are filthy rich. When in poverty, you face medical embarrassments, the humiliation of asking for financial help, physical suffering, money concerns but you mustn't feel fear and tedium of dying. Treasure every moment because life is too short and if anyone comments medical care has become an impossible burden, do some exploring and show them a picture of their “Standard of living.” They ought to raise their "Standard of giving".

 Let those walk away who don't want to stay because your destiny is not tied to them. Family is not about blood bond, it's about willing to hold your hands when you need them most. The right ones will not leave, in my case, only my mum stayed with me, everyone else turned their face. I don't expect anyone to understand my journey because they have never walked the same path, trudged the same hills. 

Humans have a natural desire to have more good things than he requires, but don't understand what others need...perils they face...ordeals they are going through...are they humane? Do they scoff? Do they abide by the small rule formed by society…" helping hands are better than praying lips…" If we have promised ought, let us keep our promise" but promises which are hollow, empty are worse than lies … the greatest sin as you make others believe and hope for something which you are sure you can't do…"Tis not what man does exalt him but what man would do!   "-- Robert Browning. 

There's really a good chance of getting old with silver hairs if my venerable disease gets an opportunity for good treatment, my potentials are realized and my battle with the selfish people ends.

This is not sentimental madness, this is the pain but I am a mermaid without tears. You can't assume me spineless in the first place, I dare to speak because I have nothing to lose.  I want my tangible trace existing after I am gone.

Picture credit: Akash Sharma and Amish Masarani

Oh, Mum because of you I am ❤

It is my Mum who is the sun and like earth, I have always felt that strange adhesive power, that power of attraction holding us together since I was born. She was my only playmate.

In the beginning, I was a healthy chubby child and she used to play with me.

Dress me up and take different photographs 

But then when my brother was born. They fussed over their second child because he was visibly ill with incidents of abnormal electrical activity in his brain due to epilepsy.

I was never a sociable child and was always lost in my thoughts. I never got attention in school and what a fine school they claim to be producing gems of students. Even now my classmates don't pay any heed to me.

This made me terribly lonely as I needed some solicitude against the deluge of solitude rising from below. It felt like I was condemned to live in loneliness, never known before. Black heavy clouds covered my life, thunder rolled and amidst the bustle and noise of existence, I found myself lonesome. It felt grim in the pitch darkness where you couldn't see a single object but still, my eyes twinkled and shone and I took tiny steps ahead holding onto whatever bush or creepers came on the way in my journey.

As I grew up in my aloneness books became my only companion. I spent a good deal of time in bookshops turning over the pages of books, I used to think if only my life were a thousand years long I could read all these books. Two bookshops became my regular haunting place to which I went for an evening walk with Mum and returned loaded with wrapped up books. 

The embodiment of "Aum" with the engineer of the Universe, sat on the mountain peak at the core of creation lost in meditation but with his extra eye and wisdom, he watched my every step.

Initially, I underwent a few surgeries but ultimately was diagnosed with a disease which is not terminal in nature but will only get worse.

It started with a nasty brain tumour which I wasn't clever enough to understand.

When Philip K Dick entered my life, his words "Reality is that which, when you stop believing in it, doesn’t go away” touched my brain in the wrong way. I had odd sensations, fidgety and nervous but didn't understand my feelings. I had odd nightmares but told my mother that aliens are trying to get in touch with me so just keep everything shush! I could hear things which others couldn't and see stuff which nobody did! I asked my mother to be sure of that and was convinced either I could see ghosts and hear them or aliens are trying to get in touch with me. I was happy with the thought.

After some time elapsed my mother saw me getting violent partial seizures while in sleep, she called my father and both tried to hold down my body getting spasms but the force with which it was happening they couldn't. After I woke up I didn't remember what happened to me at night. For this brain tumour, father ran across India looking for a suitable doctor. 

 

After fifteen days of admission,  when the doctor saw I was reading "Minority Report " in the hospital bed he denied doing the surgery but I was told these very words “Come at the last moment when the tumour grows to the size of a Deus ball” it was also added that there was a chance of getting paralyzed for life.

My father sought out a tiny nursing home in Kolkata with minimum facilities where ultimately the surgery of the tumour was done in 2006. A  craniotomy (open brain surgery) of tumours extremely vascular in nature was done.  A biopsy would make them bleed resulting in a stroke. I woke up with paralysis on the left side. After the craniotomy, I experienced total numbness on my left side and I couldn't close my fingers and make a fist. But this was sorted out by proper physiotherapy and exercise and I got back the control of my limbs but even now I don't have sensations in my fingertips. 

Currently, I am suffering the consequences as Leptomeningeal dissemination of hemangioblastomas (HB) of the central nervous system (CNS) which is extremely rare. Between 1902 and 2013, approximately 132 cases were reported. Without previous surgery such cases haven't been reported, it is due to spillage and spread of tumour cells through the cerebrospinal fluid(CSF) space in patients with a genetic predisposition to the condition. I made up my mind to keep myself well-informed so that I don't get into such situations.

I thought if everything is written in destiny or it is my past life baggage why should I pray? 

God smiled,

 "In every field of life, you enjoy the results of your work or suffer the results and you cannot escape it. This is your karma. You suffer or enjoy the results of your activities from time immemorial, but you can change the results of your karma and this change depends on the way you react. For every action, there is an equal and opposite reaction. What you are suffering is the karma of her past lives, it depends on your reaction towards your sufferings, how you are going to cope, get along, manage. Maybe on some pages of your life, I have given you lifelines and I want to be with you to watch how you are coping or help you."

It was God's wish he wanted to be with me in every struggle I face, hence he made my mother through whom he can be with me always, also during my ordeals. Thus, she's an exclusive creation of God only for me. When I am ill her thoughts gladden me and give me the will to fight and the warrior inside me fights till the end.

She prayed that I get my liver transplant.

Took me out to the Kolkata amusement park after the transplant. 

Cared for my high fever before MDR-Tb was diagnosed

Dispelling fear out of my mind.

She has pulled me out of kidney cancer on her own.

Fought with the nagging landlord together 

Went to Medanta every day for dressing the wound of debridement in the wintry days of December and January.

Took me to Medanta immediately when I got a sudden pain at the site of debridement early in the morning.

She quit her favourite sweets and ice cream because I can't have them.

We had several adventures together

My pain and worsening disease sometimes make me cranky. But she is the only one who understands what interesting things are going on inside my head. The nice crackling sounds of burning logs or the metallic confusion. Telling my doctor about my excruciating painful and odd life, and the burning tongue with the bump on it which doesn't move properly no matter how much I try or while trying to swallow 20 pills getting choked and every struggle makes me exhausted.

If I tell someone about my current experience with my brain it looks like a film script and their reactions are

But Mum treats me seriously, even my crankiness.

I'm afraid that the road looks longer

I choke on all the words which I never let reach my lips

Mum only can  feel the pain it inflicts

In my madness

With her calmness

She lends me her ear

Putting meaning in my meaningless life

Ward off my silliest fear

Her unconditional love

Her smile makes the journey worthwhile

Never let me break down and cry

I shall  stay strong because the road is long

Aye, we'd reach together by sunset.

It is because of her care I am living and because of her daring.

As anger which comes in with the pain and weird feelings ebbs and flows I  feel ashamed because anger, bitterness, outrage is a part of my brain disease. I find the sun shining gloriously, singing birds and celebrations with mum so delightful. I understand mum had been exploited and overburdened by her in-laws, how she had taken care of me and suffered herself as her own kith and kin turned their backs on her.  She had never known soundness, only struggle. With age, she too is getting tired and irritable tackling all the work single-handedly. She needs to be taken care of. I can realise her pain is indescribable, unspeakable, disgusting but so is mum's life-long struggle.

Every day I pray for the same mother in my next life, if it really exists. Perhaps in the next life, I'll be able to really care for her, as of now I am dependent on her in many ways.

We are the Mum and Princess

The fearless survivors who had many adventures in life.

Where father gave up but mum never did and still treats both children equally as her heart cries for her son who is far away from her.