Rare disease-a tragic reality in India

By Payel, India, December 17, 2014

The World out of sync with the obscure and abstruse reality fails to grasp and shrugs at the apocryphal term VHL or von-Hippel Lindau, an affliction I’m combating with to the hilt.

The urbanised and industrialised populace in thrall to domineering and hectoring; being testy to those down on luck and with insuperable malady simply struts and deftly tosses away plausibility of things beyond their ken. Adhering to conformity they refuse expanding horizons,
Thus my molecular structure of the VHL gene is flawed. The blood-filled hemangioblastomas of VHL called are much like the mishmash denizens of life, some just dunce popping up like mushrooms, groping their way and weaving dreams despising illumination, satisfied with idiocy their master being ignorance they readily hand over a prescription of disaster.The disastrous prescription is treating evolution as a hokum. Some crazies go to the extent of telling me, how can funding help if there’s no solution, Oh! Why did God create illness, I have a belly laugh and think genetic flaw is an evolutionary misfire; the mischance on genetic disorder finds its explanation as a basic evolutionary compromise. Mutation is the engine of evolution, without that we never would have evolved.
Amongst the moaning, groaning Worldlings, sorrowful ones who cry for a break as they are wreck, living unsated with submission if there’s a tough steeled soul, made to endure propelled by a vital force, never shrinking with fear,who don’t cave in but lives with pluck and verbiage is under jaundiced scrutiny by the society.
Valour and mettle despite a life proffered with a package deal of jinx, a super- rare disease tailor-made in Satan’s workshop; circumstances beyond imagination which is but a wolf in a sheep’s pen abandoned by hireling shepherd; has the Sword of Damocles hanging over her over neck. Fizzing with zestfulness; laughter in eyes, on verge of uncertainty to be snuffed out in a maelstrom of isolated life with unvanquianshable infusion of life; I meet scepticism from most and sympathy from those with a soft kernel. Sympathy is undoubtedly a double-edged sword; person offering sympathy is benign and feels helpless and sorry for me, sorry because he gets a whiff of mortality, but that very sorry leads to self-pity and despair, loneliness wells up, the restrained feelings inside hauls me to the nethermost place from where I shall never be able to come upwards and move onwards in life. I am HUMAN with feelings people often forget that. No wonder the World thinks me unwonted, but no one will ever know how much it costs to accomplish, achieve resignation, acceptance, wearing a grinning mask there’s still something human, something living inside me.
There MUST be a way to solve this problem. Surely there is; a peachy keen life awaiting somewhere if the heavy hitters stop thinking the world and all the phenomenon pivots on the everyday experiences of torpor, craven nature but even with life seemingly coming apart at seams, species of people like me can remain cheery despite fatigue, suffering, infighting not break into a flop When people choose to help, decide where to spend the charitable funds of finite resources, worthy causes; they rarely look into the needs and urgency.sweat Old Warhorse , not heartsick with reign on her feelings forges a path ahead.
The handful the persecuted minority of super-rare chronic disease are no rosinante, deemed unwanted and deleted; needy are not like bad tooth waiting to be pulled out by the society, they're in need of treatment for a better life. When people choose to help, decide where to spend the charitable funds of finite resources, worthy causes; they rarely look into the needs and urgency, where time is abbreviated. What about a disease where it’d really be 1 or 2 in a million, or such statistics in a bazillion in World population, what would it take to make people aware of that? I’ve a super rare condition, what would people,government,legal system would do to help me?
Society is all talk no texture. The meisters of the society treats me with denigration, disgrace simply for existing with “expenses spiralling upward and beset with ill fortune, disease”; makes me mondo unhappy. Not being a pushover in my deep-reaching isolation, in fleeting life, amped up strife, as I know, I’m not supposed to expect anyone to understand my journey, especially if they’ve never walked my path, so “If no one stands by you Walk alone!” The reverberations crushing, well nigh intolerable odds are such that nobody will catch. From A to izzard by life is continues being assertive to a society who don’t give a hang that I don’t yield but wield everyday in challenges and intimidations.
Those who deny science and disagree to plunge into its intricacies I bluntly say genetic disorders are not just diseases but phenomenon, the very phenomenon of mutation of the Tuberculosis bacteria (or currently Ebola global crisis) whose unique cell wall with waxy coating of mucolic acids makes it lay dormant adapting itself to antibiotics and when the immune system goes down, it flares up. Thus I combated MDR disseminated TB . HypoPara is another rare condition I have.Thus nonpareil middle name of mine is syndrome, not constricting the fun of life, its bit good to have fun under my circumstances, for my health. I’ve had plentitude of experience from society, varied ones, where I’m laughed in my face, in singsongy voice mocked at by “social workers” and “rich man’s asset Law", indeed they claim to elevate people from drudgery but, many reside in partiality in malady. The World is peopled by insensate creatures like my landlord who values money over life but Souled by people genuinely concerned.I live in a biased society where, only visible infirmity, the grotesque get help so does society take care of the rights of those with money,seems funny! I’m born with wrong disease in a wrong country, my landlord trying fancy tricks on me underestimating my Brainpower and brash nature.
6/apr/2010 my father left me without any nest egg to fall back of, not even a roof above my head; my father was Abel, and the Cain in the family acquired a stain. I’m left with no provisions, accoutrements, vittles no kith and kin yet I plunged ahead without submission with cadge from friends and well-wishers, I’m not an ingrate, I’ve no words to express my gratitude but now with aeons of drilled in facts, I’ve none to turn to, I’ve moved forth with force of a freight train, vivacity alas! I dwell in an untenable dump in an urban village with my 61 yr old widowed mother whose, not considering my brain being riddled with countless tumors. Landlord trying the rich-man’s-asset, law to amp up my strife .There’s obviously no help from anybody who did previously help in earnest, now when I need help most, I’m weary, there’s sheer ennui, eyes sting, fatigue of disparagement, implacable brutishness my brain is riddled with tumors but I’m not brain-damaged, I long for a quickie help to terminate my troubles, to fillip the spirit in the maelstrom of life but there’s no one to turn to. Suppressed feelings keep bottling up and the pressure builds, some day if something not done soon my heartstring would wring and the blood- filled tumors in brain shall explode, I shall snap!
Only my brother, a freelance Cinematographer from FTII is compromising with his life, staying with roomies but it’s too utterly utter impossible for him to pull the entire expenses, topping it no social support, no peace, my time is being stolen, time the winged chariot which is behind everybody, some feel it, some don’t but I feel it most, my time is indeed running out! My sterling doctors with soul help part knowing and understanding my strife.
In my circumstances I stand out I hope , government,social workers,legal system with no half- measures, no tarry nothing on the fence with bated breath I’m hoping this mortal silence to break, this temporal tempest or calendric cyclone would lift, people talks the talk but doesn’t walk the walk but I hope for social support and recognition and living with dignity. Law should morph not to help the rich but the utterly utter needy, loving life.

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.