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
