In my childhood when I read the story of Prometheus creating men, I never knew it would change my life.
Prometheus was entrusted with the task of sculpting Mankind from clay to populate the Earth. He was filled with grief as he found them living in caves in miserable conditions because there was no fire.
He went into direct conflict with Zeus and when Zeus withheld fire he disobeyed him and stole fire from heaven as a gift to Man. Zeus, the ruler of Mount Olympus had no compassion for Man and he meted out punishment for this daring crime to Prometheus.
Prometheus was chained to the Great Caucasus Mountains where an eagle was set to feed upon his ever-regenerating liver. It made me realise the regenerative capacity of the liver later in life.
My story is from riches to rags. Those heartless relatives...when I needed them most…the foxy ones conspired and deprived me and the rabbits turned tail and fled, fearing I might ask them to help me or stand by me. Family is not about blood bond, it's about willing to hold your hands when you need them most.
We are all familiar with the phrase “Pandora’s box”. Out of his fury, Zeus ordered the creation of “Pandora” who opened a coffer bringing into the world pain, diseases, misfortune and all hurtful things and closed it leaving hope inside.
Within four months of a brain surgery for which my father ran across India in search of a suitable hospital, I had strange symptoms and vascular tumours were detected in my liver but due to lack of money, they were left untreated. The tumours grew and studded the liver in a way that transplant was the only way out.
Devi Parvati sculpted a son to guard the door of her palace. When Lord Shiva tried to enter he drove him back and all the Gods. While Ganesha was involved in a duel with Lord Vishnu, Lord Shiva moved slowly from behind and cut Ganesha's head with his trident. Lord Shiva agreed to bring back Ganesha to life and grant him divinity. Lord Shiva did the first mytho-historic transplant surgery and Ganesha was brought back to life.
After the transplant surgery, Lord Shiva is believed to have given Ganesha an elixir to drink. One cannot help speculating if this was some potion containing an anti-rejection medication.
But I didn’t despair and kept looking for hope and I found hope amongst mankind not tied to me by any blood bond. I survived a landmark liver transplant with the funds acquired by donations.
I was diagnosed with a rare disease von Hippel-Lindau or VHL. It is a genetic form of cancer. VHL patients battle a series of tumours throughout their life. VHL may occur in up to 10 organs of the body also there is a possibility of neuroendocrine tumours.
The transplanted liver needs the immune system to be suppressed so that it isn’t rejected like any pathogen. Immunosuppressants are expensive life-saving medicines. I am on immunosuppressive medicines for life.
Today we are aware, the liver is the most active organ in the body with the power to regenerate itself after large portions of it are removed. Liver functions normally even after seventy per cent of it is removed and can grow back to normal size within a few weeks provided the remaining thirty per cent is healthy. Thus, a living person can donate a liver out of affection and go back to normal life in a matter of days. This saves the lives of patients with chronic liver disease. Liver transplant is safe and possible due to this uniqueness
My father perished soon after the transplant and my foxy uncle took our house from us and we were left penniless and homeless. It was then that my real tough times began and we had two choices ...death or preservation of life.
Not only we faced shocking poverty where we didn’t have money for food the next day, but I acquired MDR- TB living in shabby houses and changed houses seven times hounded by landlords.
My brain literally changed in chemical composition when I understood the frightfulness and the oddity of my nasty lingering illness and its larger economic implications.
When in poverty, you face medical embarrassments, the humiliation of asking for financial help, physical suffering which is always there money concerns for food, medicines and rent.
Living in a lousy cramped house I faced many acts of kindness, many acts of madness but didn't flop down to the bottom. Itching or scratching diseases have solid attention from the government and the public but in my case, many vociferous suggestions, whispering advice came to me disapproving my smiling visage.
My brain tumours are the rarest ones from 1902-2013 only 132 cases have been reported globally. A fellow remarked after he saw the picture of the scan of my brain tumours
" you have more tumours in the brain than people have lice in hair.''
I was told I can't live beyond a few months. Soon as the countless tumours would continue to spread would put pressure on the brain and spinal cord and cause herniation and compression of respiratory centres. For the past seven years, I have tried to search for anyone with my kind of brain tumours but till now I have been unsuccessful.
One of those tumours sitting atop my optic nerve in the brain makes me partially blind.
It was a warm October morning when in a merry mood I sat down with a book when out of the blue something zapped across my right eye. There was a lancinating pain as if a live electric cable was held against my eyes, cheeks, jaw and teeth. It lasted for a few seconds to a few minutes but it was difficult to keep my right eye open. I underwent an MRI scan and was diagnosed with bilateral trigeminal neuralgia also known as " suicide disease" because it is the most excruciating pain known to humankind.
I was lucky enough to get a cyberknife with the help of crowdfunding just before the lockdown. It reduced the pain but I have it on the left side too which is pending.
In the absence of government policy, the court has stepped in to develop a law and provide treatment for a rare disease, only lysosomal storage disorder patients get support from the government.
Somewhere in the Constitution, I have been given the right to live but I am being denied that.
I live with my sixty-seven-year-old mother and she is my caregiver. Our only income is her seven thousand rupees pension and in this crisis of the pandemic we are facing a lot of hurdles: not getting my treatment in proper time, proper food and also with rent, electricity and water bills but I believe God has made me with some good end in mind and is watching over me and the wreckage of my life will be sorted out by him.
I want my tangible trace existing after I am gone.
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.
I got a new lease of life after my liver transplant and every year I celebrate the day as my survival day. After fifteen surgeries including two cyberknife, and two radiation therapy I feel life is delightful. I was given a one-way ticket to this world but I could have got the life of a vermin- a mere bug being crushed under the feet or not having enough intellect to enjoy the sun poking its adorable head from behind a cloud…the star-studded clear blue night sky… or the grand sound of the thunder and with it the soul waking up or watch the iridescent play of colours of the rainbow.
I might add a finishing touch,
" When you hear hoofbeats think of horses, not zebras" …
In medicine, the term "zebra" is used in reference to a rare disease or condition. Physicians are taught to assume that the simplest explanation is usually the best so as not to go around diagnosing patients with all sorts of unfamiliar illnesses that are highly unlikely. Common diseases are what doctors should expect to encounter.
Many medics seem to forget" zebras" exist and so getting diagnosis and treatment is difficult for those who have a rare disease.
While spending hours in front of the silvered mirror admiring the scars of a liver transplant, kidney cancer, incisional hernia repair which led to the unfortunate debridement, all I see while looking at myself in the mirror is a strong, fearless, badass Unicorn.
When life was sliding out of me
Hope roused the warrior inside me
And I started my journey
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