There are countless challenges of having a disease. I have the most unusual diseases known to humankind and my strife is intense, grave, tireless 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 desired treatment and surveillance.
The name of my diseases sounds thrilling but when you start explaining, they resemble deadly babble where the prognosis is like a psychic scream.
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 tumors throughout their life. VHL may occur in up to 10 organs of the body also there is a possibility of neuroendocrine tumors.
My story is of riches to rags, I was born into a well-to-do family but those lifeless relatives...when I needed them most…the foxy ones conspired and deprived me, other relatives… the rabbits turned tail and fled, fearing I might ask them to help me or stand by me.
I wouldn't have survived unless I had money in a crisis.
I let those walk away who didn't want to stay because my 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.
After surviving the landmark liver transplant, with the funds acquired by donations, there happened a woeful incident that killed my father because of the cunning way my uncle who took our house from us. To save my life, my father couldn’t afford his bypass surgery and passed away leaving us penniless and homeless.
This was a regrettable incident and it was then that my real tough times began. It was the greatest tragedy that ever happened, a serious occasion when we had two choices ...death or preservation of life.
Instead of shedding those ferocious tears in the crook of my arm, I have drawn out my sword in the sunshine to vanquish and conquer all the evils of my life. I have never been frustrated beyond measure and chose to be a Warrior Princess.
Not only we faced shocking poverty where we didn’t have money for food the next day, but I acquired MDR- TB living in lousy cramped houses under immunocompromised conditions and changed houses 7 times hounded by landlords.
My brain 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.
Sometimes people provide help, sometimes block me or stay mute as if I don't exist and some hesitate.
Somehow we get by with arranging all those expensive immunosuppressants or anti-rejection and all other medicines every month and laboratory and radiological tests and getting surgeries at the nick of time, but uncertainty remains.
Somewhere in the Constitution, I have been given the right to live but I am being denied that.
I am not the one to commit suicide because I love life even after getting 15 surgeries, some of which were life-threatening ones.
My brain tumors 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 tumors
" you have more tumors in the brain than people have lice in hair.''
I can't describe the agony I face. But still, I feel life is delightful.
I am partially blind. I write because it's my passion. I have authored 3 books, The adventures of Mum and Princess which is a collection of detective stories, Midnight is a novel regarding a paranormal thriller with a dash of spy thriller -- and my survival story - Warrior dies dancing..that's who I am; not only that I have written about VHL in NatureIndia and an article in Sahitya Akademi. I maintain a blog known as zebraspeaps.blogspot.com and am currently working on another thriller book. I also write for the Times of India digital.
I fought kidney cancer and the rarest type of brain tumors and I'm still fighting. I hear people getting out of cancer situations but there's no way out for me. I have to fight till my last breath.
My looks don't betray the nature of my disease.
A patient ought to be always in bed groaning and wailing about her disease--- these preconceived notions prevent people from thinking about the medical attention I need, the benefits that I deserve & that I need to live with dignity.
Assistive devices, such as walkers, wheelchairs, etc can be an obvious signal that the person has a disease. Although I too need a stick for support to walk, people can't believe that I have a chronic illness which is "invisible".
Perhaps if I lacked a limb, society would have treated me with more charity.
An invisible illness means that a person can be continuously sick, but may look just fine on the outside. But they hardly realize what I lack inside. Lack of social support is an additional hardship.
My heart stopped jumping with joy, enjoying the elixir of life, and as I learned to shed tears of wicked pain hugging my mother at night when the soul screamed out with the agony and howling in pain. I hugged my mother and muttered and cried as pain then came through loud and clear as the pain of my bilateral trigeminal neuralgia wrung the energy out of me and I became pain-worn and didn't feel life is as beautiful. But I still had a bit of vitality left and was strong enough for the journey ahead.
All which is needed to lengthen the period and quality of life is a good doctor who is thinking about your health and happiness and not treating you like a guinea pig and not working for his good and fame.
Even the most brilliant medical mind can make mistakes and a few it was when their negligence led to the other doctor saying "Everything is in God's hands" because they are not God themselves. They use their acquired knowledge and skills to save a life. I keep myself well-informed to avoid such hazardous effects and don't treat the words of a doctor as gospels.
This is not sentimental madness, this is the pain but I am a mermaid without tears. However, I lack a vital emotion, fear which made me survive several life-threatening surgeries with a smile on my face even when doctors said: " Everything is in God's hands". I don't know how to cry but when Trigeminal Neuralgia attacked me, it taught me to cry.
I am facing a painful condition known as trigeminal neuralgia where the pain is so intense that you feel a live electric cable is placed against your eyes, cheek, head, jaw, teeth and that's why it's known as the suicide disease.
I got a cyberknife on the right side but the left side remains. I live with my 67-year-old mother and she is my caregiver. Our only income is her Rs 7000 pension and in this COVID19 crisis we are facing a lot of hurdles, not getting my treatment in proper time and food I need to keep my brain and other organs healthy and also with rent 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 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. My life will be perfect and trouble-free. Every day I look at myself in the mirror I see a badass zebra. Why do zebras have stripes by the way? Because it is stylish, classy, and not tacky or unfashionable. Well, why with so many rare diseases I am a Unicorn, why not?
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