January 24, 2021
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This Is The Pain But I Am A Mermaid Without Tears

Payel Bhattacharya has been diagnosed with von Hippel-Lindau or VHL, a rare form of cancer wherein patients battle a series of tumours throughout their lives. VHL may occur in up to 10 organs of the body. Her life is an unending struggle, but does she cry? Does she end her life for this? No, she respects life. This is an edited version from her blog where she chronicles her extraordinary journey.

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This Is The Pain But I Am A Mermaid Without Tears
Payel I Bhattacharya
This Is The Pain But I Am A Mermaid Without Tears
outlookindia.com
2020-12-02T17:49:43+05:30

Sometimes I wonder what's the purpose of life after all the suffering I endured since my birth. Mum makes me realize I am chosen for this journey and I should survive and bring it to completion.

To the imagination of the child, granny-tyranny seemed to look like a glaring powerfully built buzzard ready to pounce on me telling me

“You're looking alright so why do I pretend to be unwell?”

No one could discern my inner state. It wasn't just a fabrication of the imagination of a child but it's true that all uncaring, heartless, cruel creatures of my orthodox family hardly realized my pain.

I was so troubled and uneasy by their remarks that when guests came, I used to enter the drawing-room by the back door to avoid those cold, hard piercing eyes which seemed to take in every detail at a glance and sneer at me.

Since birth, all I can see is struggle even before I came to the planet.

My mother is a different being altogether.

As she got pregnant, she was subjected to cruelty and ruthlessness by aunt and granny-tyranny. They used to make my mother do heavy jobs while she was carrying her first child and she had a miscarriage.

When I was in her womb she was again subjected to heavy jobs in the kitchen. Mother had developed certain problems with her pregnancy. She worked too hard to bring me into the earth. She cares for me like no one. She used to play with me.

It was never fun for me growing up. It's quite true people say "Prosperity gains friends, adversity tries them". I never had a friend and because no one would like to socialize or go out with a limping girl.

After my brain tumour surgery, I was diagnosed with tumours compressing and displacing hepatic veins, haemorrhaging inside so that I needed a liver transplant and my relatives thought of not giving money because they have sold the portion of the property allotted to us to the South Indian singer Didi, not even the money in the bank and the jewellery according to the will because they wanted to swat me out of their way.

The friends and relatives who used to drop in at odd times often to enjoy, especially the one whom father took to Manali for some refreshment, went their own way. A few became busy with finding a groom, others just avoided.

Fie, I say! They only knew money.

In an escalating crisis, divine intervention gave me a new lease of life through a liver transplant but turned off my reliable troops, my immune system so that the organ isn't rejected.

The pharmaceutical marvel made my already bankrupted father take loans as his family denied paying the assets he deserved. His heart was 80% blocked, and he skipped his medicines to provide mine.

One day, he had a heart attack while lying down and thinking and passed away immediately without any struggle.

He didn't get a proper cremation or funeral rites, I believe he died with the wish of saving his daughter and is somewhere around me saving me from the risky surgeries time and again.

Since then we have changed seven rented houses. Landlords look good enough in the beginning but then they show their true colours because money has its charisma. No matter how much they say we pray for you but money tempts.

Mum never gave up on her child even when I went through surgeries upon surgeries, she arranged everything herself, ran to an apothecary or an NGO to get help. Sometimes the doctor said, "Everything is in God's hands."

With her, I have been worthy, cheerful, good-natured, and sociable and had many adventures, all in our imagination which desired constant improvement. She soothed and sweetened my painful life.

After being partially blind, due to the awesome, rare brain tumours floating in the CSF, my heart didn't sink, I didn't feel dazed. Even if I was told that I have a few months to live.

When her child is suffering and struggling to stay alive...mother-daughter shared our experiences with the wonderful doctors we met, and the bad doctors but didn't treat their words like Gospel. In my journey of research the role of social media, the internet, helped and Mum assumed the role of caregiver, and I did my self-advocacy. A doctor and a journalist bullied me. But after completing their medical degrees do they plunge into the world of unique diseases, keep themselves updated, keep track of all those maladies?

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.

I carried on my normal activities. I wrote books, alas someone stole one of my intellectual property while I wrote it in the peak of stabbing, stubborn pain and it is a serious matter.

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".

I am a survivor, I lost my faith, belief in whom to believe in.

I never sought sympathy, I still seek recognition… tangible trail left after I am gone. I pity them who provide me with sympathy like recently an English teacher said "O, I have sympathy for the 'girl'...Nobody called me 'the girl' before. Sympathy is feeling sorrowful, pitiful about somebody's misfortune whereas Empathy is the ability to understand their feelings as if we were having that ourselves, facing the troubles ourselves.

Do I cry, do I end my life for this? I have suicide disease and many suicides have happened pretty recently. But I respect life.

Although I wrote the book at the peak of my pain with one-eyed vision and the rarest brain tumours in the world --- leptomeningeal hemangioblastomas --- between 1902 and 2013, approximately 132 cases were reported.

Initially, I was delighted to receive an email,

"I have been running the institute in Noida and Indirapuram for last 10 years...By profession, I m a teacher and have taught the English language in renowned Institutes of Saharanpur and Dehradun...I m also a certified IELTS trainer from British Council..My qualification is M.A Eng, M.A economics, B.Ed and Diploma in creative writing.

Regards

A lady from Noida

Although the English in the email wasn't up to the mark of a teacher I cheered up.

The best way to cheer yourself up is to cheer someone else up. I thought she was a kind woman before she showed her true colours and it hurt me so much.

Later she said she's taken the printable pdf, and circulated and sold it to her students without my permission. She never even bought the book from me and is now profiting from it.

She's selling it through Google and Google won't remove or won't do anything about it.

This is how I am stuck in bureaucracy. I never enjoyed a good life.

Like my relatives, they have forgotten that the purpose of human life is to show compassion and the will to help others. We are healthy only to the extent that our ideas are humane.

Do your little bit of goodness, it's those little bits put together with kindness that brings out the Sun.

The centre of gravity of my life is my mother who tried everything to keep me moving and still in the morning in her prayers cries because only she can feel my pain. My pain in swallowing, pain in talking vanishes. She feeds me puree of nutritious food but I have lost 10kg in a few months.

Pleasures and indulgences of life aren't everything. Humans have a natural desire to have more good things than he needs. Understanding my views on life, I tried establishing friendly relations with three people but they blocked me on WhatsApp! Because death like a candle snuffer will extinguish the light of my life soon if I don't get proper treatment.

I always try to ignore the disagreeable moods of people I encounter. There will be more pain, agony, more torture if we remember how we were thrust into extreme poverty and we were penniless and had no idea if we would get food the next day.

“Someday we will die, but on all other days we will not!” We must enjoy life, every moment of it. Death will put an end to everything but facing several life-threatening surgeries, especially the liver transplant made my spirit wake up and lead a life resisting death knowing each moment might be the last ….and never brooding about my plight. It is true that as one hovers between life and death, life becomes increasingly tiresome but if you are cheerful and never down-hearted it helps the doctors too.

Live life to the fullest. Shedding futile tears, and wiping them, shucking away those pointless thoughts without any dilemma I have delved inside life to get to its treasure trove. It’s now that I can understand the value of human life and can feel the consequences of those moments that she had lost groaning which will never come back. No matter how much we wish to go back and relive an event or a happy moment or eradicate a sad moment that is never going to happen. So, live at this moment, don’t lose it. This time, this season will never be back.

Death stalks all of us upon this planet! Nevertheless, had it not been for the confusion of the struggle I would have been circumscribed by short boundaries of my pain and suffering squealing with fright.

Courage is being brave when facing new or difficult circumstances, such as Trigeminal neuralgia.

Hand-holding fantasies are not there in my life, words to uplift, encourage, strengthen, and inspire are in the dreamland. Thinking about mountains that reach to the sky, cities with a home where you don't have to pay rent, no need for a landlord, but when you realize why you are fighting multiple rare diseases you don't compare yourself to anyone whom you knew because you heal sooner.

 What is the purpose of life, the meaning of life is empathy---the ability to share and understand another person's feelings? Compassion is empathy for and desire to help another.

What will happen if we choose to ignore others who need help? There will be peril in the world, helping others to those who need without any discrimination makes people believe there is goodness in the world.

What happens when life starts throwing the unknown daggers at you? Your goodness or your parents' deeds save you.

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 to exist 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.

So I enjoy every moment of life because little birds sing on the leafy branches, warm bright sunshine light-up the cloudless sky and I love my life with my wonderful mum.

I stood on the mountaintop and spoke to a few birds flying high to teach me flying… I will fly highest and beat all, I was born to fly high, take in the pure air of the mountains amongst the mists.

Posted by Payel Bhattacharya at 9:26 PM 1 comment:

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Thursday, November 26, 2020

Filled with wonder remembering my late father on his birthday

My father was a simple-minded peace-loving charitable person unworldly enough to trust salt for sugar.

He presented himself to anybody’s service without thinking twice about himself.

He was born with a silver spoon in his mouth and before grandpa was taken ill and he had a lavish lifestyle.

He accepted his fate when after Grandpa's illness he lost his power, but he always dressed well until his dying day. Even when his clothes were worn out, he ironed them well so that they looked good and shined his shoes himself. He was a punctual man and was never late for anything. It is because of him that I have developed the habit of sleeping on neatly ironed fresh linen and until my Mum properly tucks me inside the covers, I don't get any sleep.

He cared for me so much that he celebrated his birthday by buying me an expensive book.

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 Gospel.

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?

For my brain tumour, my father was under extreme mental pressure. He worried that if according to the doctors, I turn comatose, who will care for me after him...within a month of my brain surgery he had a massive heart attack. It happened when people were around him and they admitted him to a renowned hospital in Kolkata. When I was informed about the incident, I visited the hospital with my mother, and my brother was informed about the shocking news. It was a very cold January day and my head was entirely shaven, thus I covered up my bald head, and dragged myself to the hospital.

Before he was put on the ventilation for 9 long days, he told my brother, "Take care of Didi.” He was so concerned about me even then.

Like a bolt from the blue within four months of my brain surgery and three months of my father’s massive cardiac arrest, a doctor suddenly declared that my liver needs an urgent transplant. My father was retired and after all the health woes he was penniless by then. He had no means to get the transplant done.

He turned to an elderly relative for help, to give him his inheritance so that he could save his daughter's life. She turned her back on him, depriving him of his inheritance.

I was feeling blue and bluer by the minute that all this was happening over the issue of my life. Baba foregoes his bypass surgery and with 80% of his heart blocked he ran here and there to arrange my liver transplant at Gangaram the second time because the first time we ran short of money and had to return.

We were still short of funds and I had an acute attack of pain again. I needed a liver transplant to stop the intense pain caused by those tumours which were haemorrhaging inside my belly. The magnitude of pain was so high that I was advised to use fentanyl patches. The pain seemed to stop my heart and I had laboured breathing. I used the patches almost every day and when the pain got beyond a certain threshold and it knew no bounds, I had to be put in the emergency room. Once when we still didn’t have enough money for the liver transplant, and I was in the emergency room for my intense pain and doctors were worried if the tumours have burst spreading blood in my intestines, I begged the doctor for euthanasia (mercy killing).

Our mission liver transplant was ultimately a success.

It dawned on my father that a liver transplant doesn't end after the successful completion of the transplant, but the transplanted liver needs the immune system to be suppressed so that it isn't rejected like bacteria and viruses. The suppressed immune system makes you susceptible to infections and diseases. Immunosuppressant medicines are costly and side effects are costly as well. Getting infections and requiring medicines to cure them are costly. Getting regular clinical and radiological tests are expensive. VHL and an organ transplant both require constant attention and a strict radiological and lab testing schedule to identify new tumours or those that have re-grown. Besides, you need to constantly check if the transplanted organ is working perfectly. VHL requires surgeries or treatment for symptomatic relief of tumours, benign or malignant. Regular monitoring by a doctor is required to control the plethora of illnesses that an organ transplant and VHL affliction bring. My father was at a loss as to how to manage. The very thought of how he will arrange my immunosuppressive (anti-rejection medicines) and other medicines and the plethora of illness that an organ transplant and VHL affliction brings... brought my father out in a cold sweat. He cried ferocious tears on my mother's shoulders and said that

“My princess has the will to live and she has fought the hardest and biggest war ever but how will I keep her alive?”

Surviving my first viral infection Varicella treated with Zovirax at Buddha Park.

Hearing his story when I was struggling with death, I had mental indigestion. When I was afflicted, I had a mutual understanding with my father, whom I called “Baba” that he would tell me the truth even if it was very disturbing. He said he had never got any affection from his own mother and called me “Ma” and told me his life story which somewhat consoled him. We were walking in front of the India Gate and he was confiding in me with tears in his eyes and it was a windy day. It seemed like the wind cried in accord. He said he never wanted more than what he deserved and that too when the situations were such that to save his own daughter's life, he needed money. He only asked for what his father had left for him. He was repeatedly sending his pleas to his mother, but it was all unheard by her who was influenced by his youngest brother's ploys. He, who had never asked for any assistance with his finances, wandered like a lone cloud in a wistful blue sky from door to door explaining his situation and asking for help. Sometimes it was lying and hypocrisy that weighed on his soul. His soul couldn't take the weight of the chameleons thronging and souring the reality of his life and he left us within a day after telling me all these thoughts about his family and life.

He skipped his medicines to provide my medicines and the next day he left us homeless, penniless.

But when I was diagnosed with two brain tumours and required a cyberknife, I felt for my brain tumour he got his heart attack but I felt him around me and wrote

“I'm a goose,

With an irksome noose,

Round my neck,

Zinging the tatty track

With a woooooosh,

Volubly yet I say,

Wondrous abbreviated time,

Acrid stress,

The drag race,

‘live forever or die in the attempt’... says my selfish gene.”

 

Within six months I was diagnosed with the rarest brain tumours.


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