Words fail me to describe my invincibly strong mum

Mum's eyes sparkled and a flicker of amusement played in her eyes

 when I told her I  want to write a refreshing, sweet detective story series for all ages. 

I twiddled with the thought of who will be the main character. I lay on my back counting sheep with my left hand, the usual way I sought sleep while chanting my mantra. 

The door was partly ajar and a ray of light was coming through it. I could discern mum with too much excitement was running like a chicken with its head cut off. I  could immediately think of how mum had nourished my soul when father's old ticker stopped and the greatest catastrophe ever happened because the sly villain was desperate for a welcome addition to their bank account.

I looked dazedly then jolted into coherence as an intense feeling washed over me. I remembered how mum brought hope when my life went topsy turvy, with her exceptionally precise type of mind she straightened and tidied all the mess of, medical and other documents father left. She neatly tagged everything and neatened up so that we could survive and my medical documents aren't missing and my treatment continues. Even now she goes pottering around the house cleaning and tidying every corner. She doesn't believe in living in a whirlwind of mess. She has a very good eye for little details. 

If anyone could arrange a series of apparently unrelated facts into a coherent picture it was Mum with her peculiar alertness. I decided I  would write a few escapades and she would be my heroine. 

Only she can bring the assassins to the justice of a mysterious death. She is good at ferreting out the facts in reality and she would do a jolly good job in the realms of imagination in my tales. She can stand against those with nerve, unmitigated gall who commit first-degree murder of someone's desires and dreams. She can bring in hope through her extraordinary feats by pulling out a  soul whose spirit and dreams have been killed. 

I'm afraid that the road looks longer

I choke on all the words which I never let reach my lips

You only can  feel the pain it inflicts

In my madness

With your calmness

You lend me your ear

You put meaning in my meaningless life

Ward off my silliest fear

Your unconditional love

Your smile makes the journey worthwhile

Never let me break down and cry

I stay strong because the road is long

Aye, we'd reach together by sunset. 

Read my book of "The Adventures of Mum and Princess " on Amazon kindle and Flipkart.

How did the flames begin?

It all began with a come-to-the-battle sort of poetry. All magic, every transformation begins with poetry.

In the midst of my struggle and every day of suffering, after the tragedy of losing my father when I faced the indifference of the unfeeling people it churned up those memories when my father realized that all his sly and crafty brother had done is a manipulation of his trust. He shouldn't have trusted them too readily. It was as if he had given his trust on a platter to those who had tricked him earlier. He panicked and lost his dignity and he couldn't take any more of it. He realized everything and told me his story of being deprived of any motherly love.

The very next day he had a massive cardiac arrest and I rushed with him in a police ambulance to Sir Gangaram Hospital.

After my father's departure to the other world, our real struggle began. And that marked the beginning of the most difficult phase of my life, leaving me penniless and almost homeless. His death was the single most calamitous event of my life.

I had no time to bemoan my fate that my father had left me this way… how will I get my immunosuppressant medicines? How will I get my laboratory tests done? Where rent and basic necessities coupled with treatment expenses added up like ‘defence budget’.

When an embodiment of humanity, supposedly caring person filled with morality, roared,

“Who do you think you are? A princess?”

My circuits threatened to breathe out fire and destroy everything...I have never been spoken to in this fashion, ever and it was a cold cruel insult. The chameleon has forgotten that in my own capacity I had helped his wife with the best doctors and a minor surgery...

I wrote the poem which inspired me to fight and never give up...

Warrior Princess 

A Warrior Princess  

A Warrior princess I am,

I wage wars with head held high,

A warrior, never afraid of wounds,

A Warrior dies dancing that’s who I am.

Trudging hills never trodden by,

Propelled into uncertain territory,

Soul deeply wounded by black melancholy,

Never stooping to fear or sentimentality,

Chasing desires, not waiting for fate to show mercy;

Flowing forth with random delight in stark reality.

Gloom of doom come what may;

Banished all worries, doubts,

I moved onward in the track valiantly,

Imploding yet ebullient in a spree,

Compounded difficulties, hiemal cold manner can’t faze me,

Benign friends express fervency.

Content with mysterious, meaningless, contradictory, hostile,

Unexplainably warm and giving,

Fearfully enclosed minds,

I hurtled the absolute randomness,

On the verge of uncertainty. 

Proffered relations, friends, unfailing support,

Bravado, mercy, pity, arrogance,

A loner rushed forth in the path of life.

“Pretty-nigh impossible!” was told ad infinitum,

Equivalence sought,

Yet situations, reasons, excuses remain distant,

The exactitude of pain has never been meted out to none. 

Halt! Patience!

I hear people cry,

But I'm at a point of no return.

I’m brave, I rave,

Grave only when repressed,

Crammed with memory, hoarding much,

Endured much, weary of wounds,

Feelings which built up in the War,

Hardened and died inside,

Soul searcher I am,

Reality seems absurdity,

Kind, affectionate friends,

Elevate me, eke out positivity.

I still dare to change the things I can,

I resuscitate ceaselessly,

I wage wars with verve

In a point of no return

Yes, a Warrior Princess I am.

Wild bouts upended direction,

Infallible friends formed my legion,

Marched with me without regression,

Flew fearless without reason,

Melancholy replaced by undying optimism,

Turned to memory,

Worries banished, never looked back in history.

Prettify, nor falsify no one,

They are but for a season,

Gathered to escort the lost one,

By way of cosmic expression,

Collective train of thought mitigates privation.

Here comes the season

Of faces blurring and fading away

Like a dream, in illusion.

 Life: - Annus Mirabilis!!

 Chained me in an endless cycle,

Not unfolding its mystery afore.

Life is a game of chance;

Granted once;

Temporary stay wagered

To expire, I thus learn;

Entering the reality makes you stand

In a tricky, dangerous position,

Whence, you are in a point of no return.

Thus I welcome change with open arms,

Grow and live vibrantly not in a trance,

Soul dance​,

Immense will billow like a towering tsunami;

Summon up the courage to live life once,

Regression dishonour efforts and makes them undone,

Thus I move on with fluency.

Friends not attacked by dubiousness;

Try utmost to form a supportive system;

Don’t believe living in ‘jocund company’

Dying alone in ignorance;

They want to evolve from Darkness;

Tries revamping my life in earnestness;

They are not Friends for a season, but a lifetime,

I hurtle the chaotic reality in their glorious presence,

I resuscitate ceaselessly,

Wage wars from a point of no return.

A Warrior Princess, I am.

I haven’t forgotten everything of my past because my struggle hasn’t ended... every day of suffering, part of which remained in my circuits and when those fateful memories turn up, the electrons in the brain gets charged and misfires and I start remembering extra my mother channelizes that bottomless energy and I start writing and spinning out tales, thus I became an author. I can’t get back to my childhood days where I never enjoyed the hop-skip-jump of those days. Realizing such a strange tour is out of the question, I decided to wage a war against the rogue protein molecules( VHL or Von Hipple Lindau) that brought me into a condition that a faulty part had to be changed and the system rewired. Thenceforth everything went wrong from the sub-atomic level and other parts started sprouting unwanted malicious codes (tumours). They disrupted or inflicted some other harmful action on the network. I survived kidney cancer. One of those malicious tumours sitting atop my optic nerve in the brain makes me partially blind. Not even those killer sessions of radiation therapy could shrink it. Those tumours, especially the nasty ones popping up in my brain makes living every day a constant fight. Strangely enough, I became something of a connoisseur of the bizarre and the grotesque which led me to write the novel "Midnight-a thrilling novel".I also wrote ‘The Adventures of Mum and Princess” which is a really thrilling book, unlike the deadly one (Midnight)you just read about.

A brief glimpse into my baffling life

I, Miss Payel Bhattacharya was an unusual child. I was never concerned with petty things, the niceties, and the worthless stuff in life. My tangential connections with friends and relatives left me isolated but I was blessed with a wonderful mother. I grew up in the shadows of my "Wonder-mum", my extraordinary mother who helped me wipe out the nasty memories and realize the glorious, pleasanter side of life.

The frightful cliché in my life has always been money. As long as there was money my kith and kin cared but when one betrayed others shirked their duty which was shameful indeed.

I was born into a well-to-do family but those unfeeling relatives...when I needed them most…the foxy ones conspired against me so that I don't ’t get my rightful legacy in a time of great need and that existence eat me up like a cat eats a canary and I meet my death. 

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 situation. But I and my parents had advice in plenty. 

But I didn’t despair and kept looking for hope and I found hope amongst mankind not tied to me by any blood bond. It is their combined effort that pulled me out of death’s grip when I needed a landmark liver transplant to save my life.

It was then that I was diagnosed with a disease known as VHL or von Hippel-Lindau. It was then that I was diagnosed with a disease known as VHL or von Hippel-Lindau. von Hippel-Lindau or VHL which is a genetic defect that causes capillary growth to go out of control. While the tiniest blood vessels or capillaries usually branch out gracefully like trees, in VHL patients a little knot of extra capillaries forms a growth or tumour and in certain cases, it turns cancerous. 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 like liver, kidney, brain, spinal cord or retina, inner ear, pancreas, pheochromocytoma, paraganglioma,  can also happen.

I was diagnosed with this very rare disease hardly known in India, and my landmark liver transplant which was a life and death affair because I had haemorrhaging tumours in the liver which individually couldn't be cut-out or removed.

There was a woeful incident though, which killed my father...not my transplant but the cunning way uncle who took our house from us. In order to save my life, my father couldn’t afford his bypass surgery and departed leaving us penniless and homeless for my sly uncle took our house by crafty means. This was a regrettable incident and it was then that my real tough times began. It was the greatest tragedy that ever happened, the serious occasion we had two choices ...death or preservation of life. We knew everything will be lost in the mists of time so without wasting a moment, 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 but always knew hope can give you wings thus instead of leading undeniably a monotonous life, I led the life of a warrior. The happiness of our heart was the thing to be considered before anything else and I am sure it would turn out wonderfully in the end.

Surprisingly after his death my cogs and circuits malfunctioned, and time cheated on me. I needed those life-saving anti-rejection medicines and acquired the infectious consumption disease(MDR TB) under suppressed immunity within a month after his death. Strange feelings came over me and it seemed strange and lonely sitting in those unhygienic shabby houses. Now, after a few years sitting in my chair, it seems strange that I survived 15 surgeries and radio-surgeries under such shockingly odd conditions.

My mother’s belief and boundless energy sustained us and not only we faced shocking poverty where we didn’t have money for food the next day, but I also overcame MDR- TB and its expensive treatment along with two sessions of radiation therapies (in the brain for leptomeningeal hemangioblastomas which are very very rare and only 132 cases have been found between 1902-2013) which went on for six weeks, one cyberknife and not forgetting the kidney cancer. All my life-saving surgeries and treatments and diagnosis happened at the nick of time. I’ve had numerous surgeries, not dismissing from mind thyroidectomy which led to HypoPara (hypocalcemia due to low parathyroid hormone level). We get by with arranging all those expensive immunosuppressant (anti-rejection) medicines for the liver every month and laboratory and radiological tests. 

The Bringer of light wisdom and understanding helps us through his messengers with a kind and pure heart.

I get stereotactic radio-surgery before the growing tumours start putting pressure on the brain and become symptomatic. I have lost vision of my right eye for not being able to avail radiation therapy at the right time because of financial reasons and also I was diagnosed with an RCC ( kidney cancer) at the same time.

Advanced radiation techniques, such as radiosurgery, are more effective than conventionally fractionated radiotherapy, but it is difficult to perform high-dose radiation therapy or radiosurgery for numerous lesions scattered throughout the brain.

Radiosurgery appears to be safe and has prevented local recurrences in my case, with fewer sessions than conventional radiation which caused white matter changes representing chronic ischemic changes. I couldn't afford a cyberknife and underwent conventional radiation therapy in 2017 after which this happened.

Sometimes tumours treated with radiation, on follow-up MRI imaging scans, appear stable without evidence of growth even mildly shrinking every time.

I have to seek help from people who are always uncertain, thus deferring the necessary treatment of my rare disease. Sometimes their understanding and realizing that if put in our shoes how they would find themselves which lead them to help us and they are the messengers of God with unquenchable kindliness.

Our only source of income is my mother's Rs 7000 pension. We have no other property or source of income but somehow we have been pulling and managing our needs and treatment.

A few days ago, a new chapter started in my life story. Suddenly out of the blue something zapped across my right eye. The jolt of lightening appeared repeatedly. It lasted for a few seconds to a few minutes but it was difficult to keep my right eye open. This continued for the next few days but the pain was gone as abruptly as it appeared.

I underwent an MRI scan. A mess of nerves was found in my brain which is causing the symptoms. I am now fighting bilateral trigeminal neuralgia which is characterized by a sudden, recurring stabbing, electric current-like pain usually unilateral in nature. Bilateral presentation is rare. It is also known that it has something to do with an artery being near a nerve.

Pharmaceutical science has medications to control the pain. I was initially put on medicine but it mostly didn’t contain the pain. I had fleeting jabbing pain which would fade away at the most in a few hours. Pulses of electricity travelled through my cheeks. Doctors upped and upped my dosage but I was not satisfied.

I had side-effects like diarrhoea. I asked for consultation on less invasive procedures like cyberknife but I was told that won't work only an MVD surgery would. I went somewhere else for less invasive procedures like Gamma- knife but I was advised for Radiofrequency Lesioning but still, they were reluctant to do it. There it was confirmed by the doctor that the left-hand side pain which is milder than the right-hand side is also due to trigeminal neuralgia. Thus I have bilateral trigeminal neuralgia. The trigeminal nerve has three branches: ophthalmic, maxillary and mandibular. According to the doctor it is rarely seen that bilateral trigeminal neuralgia with pain in all three branches on both sides.

I revisited the neurologist who diagnosed it. There a new medicine was added to my list of medicines which made my blood pressure drop instantly with the intake of the first pill. I asked him that if it's true I had bilateral trigeminal neuralgia...he gave a knowing wink and said but the pain in the left side is milder...why should he hide it from me? Who is he to decide the intensity of my pain? 

Another doctor I visited said I have very critical left trigeminal neuralgia! He didn't even look at the MRI properly and was just after doing an MVD surgery and a biopsy of the leptomeningeal hemangioblastomas. The same thing happened with the doctor who denied cyberknife because he wanted a biopsy of the leptomeningeal hemangioblastomas... I was told that I should come perhaps at the last moment… I had a feeling of history being repeated. 

When my father was alive he went to most hospitals across India for my growing brain tumour causing partial seizures but I was told these very words “Come at the last moment when the tumour grows to the size of a Deus ball” it was also added that there was a chance of getting paralyzed for life.

 I didn't want to be a guinea pig. But the major thing which happened is after the medicine was added my BP plunged down. I have tachycardia and I take medicine for that. I stopped the medicine and drank lots of fluids but to no avail. Doctors persisted in their decision of choice of medicine... They keep commanding in a military-like way that I need to take those medicines and my only respite from the overwhelming pain is the MVD surgery. I wanted to avoid the surgery because of my rare condition of leptomeningeal hemangioblastomas, a condition of multiple or numerous brain tumours, why don’t they understand that? Biopsy could lead to meningitis, lots of bleeding and even cell spillage and lead to complications and I might have died. Something which is confirmed by MRI needn't be confirmed by sticking needles into them, making me a guinea pig for their studies. I needed a cyberknife radio-surgery to destroy the nerve in the brain.

I got support and the cyberknife of the right side --the most painful side happened about on 17 th March 2020 month we returned in time. The nerve being shot with a high dosage of radiation to destroy it.

I am also an author. After I returned from a successful cyberknife I got an email stating

" I appreciate your efforts put in to give to the society an interesting and captivating book 'Adventures of mum and princess' that people of all ages enjoy reading. I would highly recommend this book to the students of classes 8,9,10 in my institute 'Monika's Institute of English Language " from Monika Thakur who is a teacher by profession and has taught the English language in renowned Institutes of Saharanpur and Dehradun. She is a certified IELTS trainer from British Council with a qualification in M.A Eng, M.A economics, B.Ed and Diploma in creative writing.

I uttered an exclamation of gratification..good! Because I felt those who spelt out my conclusion have not succeeded and a pulsating feeling of excitement went through me. I won't have to spend time living like a disabled person spending time commuting between the house and hospitals and shifting houses because landlords don't care or understand shabbiness and neglect the trouble. I found my purpose, it felt as if I was born for this- to fight and write and be an author. I could do something which would make people happier and remember me as a warrior.

I can't say about the entire pain I got while typing the lines of my books with my one-eyed vision. Therewith swelling in my eyes and eyes which felt like on fire with tears streaming down. There was pain at the back of my head and the ear and even the pinna but my passion made me write 3 books despite the debilitating pain. Pain hasn't entirely gone but in a month, I can say I am more than 80 % better. Pain comes back little with weather changes or emotional strain and I have neck muscles stiffness with trouble swallowing. But still, thoughts about getting cyberknife treatment for the left side of the brain remains.

All which is needed 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 own good and fame. I got the opportunity to choose between good and better doctors four times in my life, during my liver transplant- who didn't say transplanting the liver will cause the tumours to grow once again and it will be a futile effort; my MDR TB treatment-cured me of MDR TB which other doctors couldn't and because those doctors failed because of whom I can't walk properly as I had bone TB and I still need the help of a stick to walk; my kidney cancer-understood before taking out the cancerous tumour in kidney doing fine needle biopsy could spread cancer to other parts of the body and trigeminal neuralgia-understood risks of MVD surgery on a leptomeningeal hemangioblastoma patient.

I think one shouldn't believe in a doctor with eyes closed, rather be aware of what one is facing and the right doctor can definitely treat the disease.

I hope for aid from the government to cover this following cyberknife and the high cost of subsequent medicines including anti-rejection medicines, radiological and lab tests required for brain radio-surgery, liver transplant and kidney cancer. Since it is impossible to predict how the disease will present or progress, active surveillance is exceptionally important for people living with VHL also considering the emergencies like when I had tetany emergency twice brought on by dramatically low calcium levels, also known as hypocalcemia. Tetany is a condition marked by intermittent muscular spasms, caused by malfunction of the parathyroid glands and a consequent deficiency of calcium. or like the infection, I got after visiting a dentist which brought on 105F fever or the night when I kept on vomiting whole night losing 3 kilos in one night.

The transplanted liver needs the immune system to be suppressed so that it isn’t rejected like bacteria and viruses. Immunosuppressants are expensive life-saving medicines. I am on immunosuppressant.

Treatment for VHL varies according to the location and size of the tumour. In general, the objective of treatment is to treat the tumours before they grow to a size large enough to cause permanent problems by putting pressure on the brain or spinal cord. This pressure can block the flow of cerebrospinal fluid in the nervous system, impair vision, or create deafness. Treatment of most cases of VHL usually involves surgery to remove the tumours before they become harmful. Certain tumours can be treated with focused high-dose irradiation. Individuals with VHL and organ transplant need careful monitoring by a physician familiar with the disorder to control the plethora of illnesses that organ transplants and VHL affliction brings.

Besides, my brother who lives in Mumbai has not only lost his job due to the lockdown caused by the coronavirus lockdown but has also been told that his pending dues from December 2019 would not be paid until the company he worked for becomes financially stable.

Also since he is a freelancer, he can't support my treatment and daily needs totally. He pays the rent for our accommodation.

We need a humble, modest, hygienic place to live but not like those shabby houses with dripping roofs where I contracted several infections.

I appeal to the government also to provide such a dwelling, rent-free because of the huge expenditure of the disease and the requirements of a hygienic environment for an immunocompromised patient and MDR TB survivor.

Our destiny is not always determined by what happens to us, rather how we react to what happens and surely not by what life brings to us, but our attitude towards it. The outcome of a positive attitude is always positive thoughts and eventually leading to positive events. Life for me is a challenge to be met with courage. Life is a game of skill with an element of chance. Life comes to a standstill if you give up hope thus like every life from desiring to live she fought on. Like Asterix and Obelix travelling the untrodden track, I jest with Mum about the crazy Romans we met in our lives.

Journey through the gravelly road of life

I make my own roads,

Every stone on the way has a significance,

If I trip I gain more experience,

My remembrance, 

Helps me to use my diligence,

To make my road better.

To tackle my sorrow,

So that my eyes don't get wetter, 

Without a hurt, without a tear,

Without pain, without fear,

Without despair,

Where everyone will care for each other,

Angst and pain will disappear.

Everyone will love one another.