Oh, Mum because of you I am ❤

It is my Mum who is the sun and like earth, I have always felt that strange adhesive power, that power of attraction holding us together since I was born. She was my only playmate.

In the beginning, I was a healthy chubby child and she used to play with me.

Dress me up and take different photographs 

But then when my brother was born. They fussed over their second child because he was visibly ill with incidents of abnormal electrical activity in his brain due to epilepsy.

I was never a sociable child and was always lost in my thoughts. I never got attention in school and what a fine school they claim to be producing gems of students. Even now my classmates don't pay any heed to me.

This made me terribly lonely as I needed some solicitude against the deluge of solitude rising from below. It felt like I was condemned to live in loneliness, never known before. Black heavy clouds covered my life, thunder rolled and amidst the bustle and noise of existence, I found myself lonesome. It felt grim in the pitch darkness where you couldn't see a single object but still, my eyes twinkled and shone and I took tiny steps ahead holding onto whatever bush or creepers came on the way in my journey.

As I grew up in my aloneness books became my only companion. I spent a good deal of time in bookshops turning over the pages of books, I used to think if only my life were a thousand years long I could read all these books. Two bookshops became my regular haunting place to which I went for an evening walk with Mum and returned loaded with wrapped up books. 

The embodiment of "Aum" with the engineer of the Universe, sat on the mountain peak at the core of creation lost in meditation but with his extra eye and wisdom, he watched my every step.

Initially, I underwent a few surgeries but ultimately was diagnosed with a disease which is not terminal in nature but will only get worse.

It started with a nasty brain tumour which I wasn't clever enough to understand.

When Philip K Dick entered my life, his words "Reality is that which, when you stop believing in it, doesn’t go away” touched my brain in the wrong way. I had odd sensations, fidgety and nervous but didn't understand my feelings. I had odd nightmares but told my mother that aliens are trying to get in touch with me so just keep everything shush! I could hear things which others couldn't and see stuff which nobody did! I asked my mother to be sure of that and was convinced either I could see ghosts and hear them or aliens are trying to get in touch with me. I was happy with the thought.

After some time elapsed my mother saw me getting violent partial seizures while in sleep, she called my father and both tried to hold down my body getting spasms but the force with which it was happening they couldn't. After I woke up I didn't remember what happened to me at night. For this brain tumour, father ran across India looking for a suitable doctor. 

 

After fifteen days of admission,  when the doctor saw I was reading "Minority Report " in the hospital bed he denied doing the surgery 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.

My father sought out a tiny nursing home in Kolkata with minimum facilities where ultimately the surgery of the tumour was done in 2006. A  craniotomy (open brain surgery) of tumours extremely vascular in nature was done.  A biopsy would make them bleed resulting in a stroke. I woke up with paralysis on the left side. After the craniotomy, I experienced total numbness on my left side and I couldn't close my fingers and make a fist. But this was sorted out by proper physiotherapy and exercise and I got back the control of my limbs but even now I don't have sensations in my fingertips. 

Currently, I am suffering the consequences as Leptomeningeal dissemination of hemangioblastomas (HB) of the central nervous system (CNS) which is extremely rare. Between 1902 and 2013, approximately 132 cases were reported. Without previous surgery such cases haven't been reported, it is due to spillage and spread of tumour cells through the cerebrospinal fluid(CSF) space in patients with a genetic predisposition to the condition. I made up my mind to keep myself well-informed so that I don't get into such situations.

I thought if everything is written in destiny or it is my past life baggage why should I pray? 

God smiled,

 "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. Maybe on some pages of your life, I have given you lifelines and I want to be with you to watch how you are coping or help you."

It was God's wish he wanted to be with me in every struggle I face, hence he made my mother through whom he can be with me always, also during my ordeals. Thus, she's an exclusive creation of God only for me. When I am ill her thoughts gladden me and give me the will to fight and the warrior inside me fights till the end.

She prayed that I get my liver transplant.

Took me out to the Kolkata amusement park after the transplant. 

Cared for my high fever before MDR-Tb was diagnosed

Dispelling fear out of my mind.

She has pulled me out of kidney cancer on her own.

Fought with the nagging landlord together 

Went to Medanta every day for dressing the wound of debridement in the wintry days of December and January.

Took me to Medanta immediately when I got a sudden pain at the site of debridement early in the morning.

She quit her favourite sweets and ice cream because I can't have them.

We had several adventures together

My pain and worsening disease sometimes make me cranky. But she is the only one who understands what interesting things are going on inside my head. The nice crackling sounds of burning logs or the metallic confusion. Telling my doctor about my excruciating painful and odd life, and the burning tongue with the bump on it which doesn't move properly no matter how much I try or while trying to swallow 20 pills getting choked and every struggle makes me exhausted.

If I tell someone about my current experience with my brain it looks like a film script and their reactions are

But Mum treats me seriously, even my crankiness.

I'm afraid that the road looks longer

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

Mum only can  feel the pain it inflicts

In my madness

With her calmness

She lends me her ear

Putting meaning in my meaningless life

Ward off my silliest fear

Her unconditional love

Her smile makes the journey worthwhile

Never let me break down and cry

I shall  stay strong because the road is long

Aye, we'd reach together by sunset.

It is because of her care I am living and because of her daring.

As anger which comes in with the pain and weird feelings ebbs and flows I  feel ashamed because anger, bitterness, outrage is a part of my brain disease. I find the sun shining gloriously, singing birds and celebrations with mum so delightful. I understand mum had been exploited and overburdened by her in-laws, how she had taken care of me and suffered herself as her own kith and kin turned their backs on her.  She had never known soundness, only struggle. With age, she too is getting tired and irritable tackling all the work single-handedly. She needs to be taken care of. I can realise her pain is indescribable, unspeakable, disgusting but so is mum's life-long struggle.

Every day I pray for the same mother in my next life, if it really exists. Perhaps in the next life, I'll be able to really care for her, as of now I am dependent on her in many ways.

We are the Mum and Princess

The fearless survivors who had many adventures in life.

Where father gave up but mum never did and still treats both children equally as her heart cries for her son who is far away from her.

When lightening strikes!

 

I have a long glorious history of serious illnesses because of my entry into the world at the wrong time. I have led a notably psychedelic life and I confess that I was both puzzled and fascinated. I can’t say it wasn’t without strife because, in the beginning, it felt ghostly and here I will talk about one such ghostly ailment.

It was a warm October morning and I was in a merry mood having a good time because of the approaching Durga Pujas. I always try to make most of the time with my mother. The season is very inviting and makes us happy and less anxious. I sat down with a book determined to enjoy it thoroughly but 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 and it confirmed the diagnosis of trigeminal neuralgia.

In trigeminal neuralgia (TN), the trigeminal nerve's function is disrupted. It is the most excruciating pain known to humanity-- this intense, stabbing, electric shock-like pain is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and jaw. Sometimes called the suicide disease. Bilateral presentation is rare. 

Pharmaceutical science has medications to control the pain.

O’ I am in pain, tell me if there is any magical potion?”

The medical man put his attention,

Found a vessel pressing a nerve in the brain.

Leading to spasms of intense pain.

Stabbing pain, eyes tear,

Foggy vision, colours faded, 

The sky is blue

Is it true?

I feel light-headed.

Trigeminal neuralgia can make me constantly frown,

But doesn’t have the nerve to put my spirits down.

I scowl in vexation.

 

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 went somewhere else for consultation on less invasive procedures because the treating doctors were telling the haunting medical lore the melancholia of which was that Microvascular decompression (MVD) surgery is the only hope and while doing so they'd do a biopsy of my leptomeningeal hemangioblastomas not caring about the drastic and dramatic effect, not considering the highly vascular nature of the tumours---that they are richly supplied with blood vessels. A biopsy would make them bleed resulting in a stroke. After my first brain tumour surgery, done in 2006 I woke up with paralysis on the left side. After the craniotomy ( open brain surgery) I experienced total numbness in my arms and hands and I couldn't close my fingers and make a fist. But this was sorted out by proper physiotherapy and exercise and I got back the control of my limbs but even now I don't have sensations in my fingertips. Looking at tumour cells in the cerebrospinal fluid under high-resolution MRI scans are all that is necessary for an accurate diagnosis. A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby cell spillage.

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 a bilateral manifestation of 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 previously diagnosed it. A new medicine was added to my list of medicines. 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? Mistaking the pain in the jaw for a dental pain I sought the help of a dentist. Because of my low immunity, I acquired some infection and got 105F fever. I wouldn't have suffered if he hadn't held back the truth from me.

But the major thing that happened after the medicine was added was my BP plunged down. I have tachycardia and high BP most of the time. 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... He kept commanding in a military-like way that I have to take those medicines and my only respite from the overwhelming pain is the MVD surgery. It was because of that stubbornness that I ended up vomiting the entire night losing three kilos in the process.

I never knew how to cry because I was born without the vital emotion fear but when Trigeminal Neuralgia attacked me

Irrepressible pain

Gloom hysteria

I am Trigeminal Neuralgia

Daggers stab eyes 

Shedding tear

Sending a wave of fear 

I learnt to cry as a jabbing pain as if a live electric cable was held against her eyes, cheeks, jaw and teeth.

A bolt of pain shot up the face,

Reached the farthest limit,

With disdain without grace,

Sneaking into the throat,

As quiet as a mouse

Huddling behind the ear,

Pulsating in the mouth,

Strange tic

Distorting face so quick, 

Drilling teeth, eye swelling,

Making it tormented house,

 A bedistressful dwelling--

Jumping off, crossing sides

Jumps and attacks and hides

It's a race against time,

A gloomy struggle all-day

As the predicament shook me to the core

It's a dreadful dream, a nightmare

That I battle every day and more

Heat or cold, the baleful row

Can't thrust me into diabolical shadow,

Behind the darkness of the scare,

Is the sparkling cloud,

And the sun shining bright and so proud. 

My heart stopped jumping with joy, enjoying the elixir of life and as I learnt 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 a bolt of lightning right out of nowhere started me hitting again and again.

All my life I have kept looking for hope. I have undergone countless surgeries including cancer and liver transplant and a few life-threatening ones but I have never stopped hoping. Hope sustains us. I got this hope from Mumbai who said he could definitely treat me by cyberknife radiosurgery. 

I applied to many trusts one said it's done but rejected at the last moment with words that  "it is too expensive", next one just denied that there are many genuine cases waiting and the other one said they had helped me earlier but they have now started helping children.

I got support and kindness and the cyberknife of the right side-- the most painful side happened and we returned in time just before the covid19 lockdown. The nerve was shot with a high dosage of radiation to destroy it. But the pain in the left side remains as the left side is still pending. Also, there is trouble swallowing, stabbing in the throat bumps in the tongue which I can't figure out.

Now the left side hurts such that I can't smile, let alone talk. I mostly feel paingry.

I feel I can predict the weather better than the weatherman.

I'm afraid that the road looks longer

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

Mum only can  feel the pain it inflicts

In my madness

With her calmness

She lends me her ear

Putting meaning in my meaningless life

Ward off my silliest fear

Her unconditional love

Her smile makes the journey worthwhile

Never let me break down and cry

I shall  stay strong because the road is long

Aye, we'd reach together by sunset.

There is a concern that immunocompromised patients are at a greater risk of morbidity and mortality due to COVID-19 infection, although data on liver transplant patients is limited at present. Post-transplant patients are advised to avoid hospital visits and use telemedicine thus we are prisoners in our own home until it is safe outside.

The pandemic has forced a delay in the treatment of my chronic illness. Due to the unpreparedness of such a sudden event and not maintaining social distancing, during the lockdown and not wearing a mask it has spread. Now it's difficult to handle it until a genuine vaccine is developed. This way many educated people have put the lives of the vulnerable in jeopardy and many are suffering but I don't know if there is anyone like me, immunocompromised and with lung damage because of MDR-TB and getting lancinating pain due to Trigeminal neuralgia. Wearing a mask isn't painful and has any discomfort but it says that I care about everyone. 

The mind is a powerful weapon they say, 

Knowledge is the mainstay.

As the catastrophe happened, 

Educate the public and allay fear, 

Alleviate the gloom of doom.

Prepare, be aware,

Avoid public places, 

Refrain touching faces, 

Stay clear,

Life is not unfair,

Soon days will be brightened. 

In jeopardy  may humans stand,

But by maintaining distance,

Not travelling to any distant land;

Ensuring safety of the vulnerable, 

Being responsible, together we stand. 

Isolation is not perdition.

Not being utterly hopeless,

But being fearless,

Facing rigidly in calmness

Can bring the nemesis of pathogenesis.

The sinister brute would cast off its crown,

As time frown,

Monsters, cruel, fierce and base;

Causing deaths of life-forms in a brief time,

Would decay and fall,

Die a death approved by all.

Freedom and independence

Complete freedom is abstract, existing only in the mind. On 15 August 1947, the first Prime Minister of India, Jawaharlal Nehru raised the Indian national flag above the Lahori Gate of the Red Fort in Delhi. Politicians and pedagogues hailed the intellectual speech as a declaration of independence. 

Meanwhile, seventy- three years have passed, the country and the country-men, faced peril several times in many ways jeopardizing their rights to existence.

On the one hand, there are scientific achievements Mangalyaan and

Chandrayaan.  

Women have triumphed over many fields-- from setting a medical example to a lawyer with principles, being a pilot to being a cab-driver; females have conquered plenty of fields, on the other hand, there are still enormous gaps in thoughts, prejudices and discriminations exist.

In our everyday lives, we say "Motherland". To defend the honour of our Motherland we lay down our lives at the border against the enemy.

 Feminine energy is the spirit of the universe. Creating all matter and consciousness, the eternal and infinite, the metaphysical and reality, the soul, of everything.

It pains me to set down the inconvenient and blushful facts. We should have evolved with education from patriarchal ways of the past. 

Women symbolize national honour, thus any act that defiles and violates women’s bodies becomes a political weapon. The one nationwide uproar, the ebb and flow of decisiveness and aggression happened once but who cares about a woman walking her dog during the pandemic in a side lane where there were hyenas waiting in a car for her arrival to jump her. She was lucky enough to run back to the community. There is no doubt safety in many forms is lacking in our lives.

Women play many roles in her lifetime from daughterhood to motherhood many bonds bind a woman with her relations but it's trifle disturbing that everyone isn't plucky against the savagery. But many of them are exploited after marriage. Their potentials and qualities are scarcely recognised.

Government of the people by the people for the people does not treat people equally.

 I came across a news article titled " Should State pay for treatment of rare diseases?"

Which speaks about should the government pay for the treatment of rare diseases? Well, I spoke to the advocate mentioned in the news article. She said she is appointed by the court to help the court decide this matter. 

According to her in absence of government policy, the court has stepped in to provide treatment to only lysosomal storage disorder patients. She explained how the law has developed, and the rare diseases are handled in court so far are only lysosomal storage disorders.

The government can procure medicines but not where there is a need for surgery or advanced technology to deal with a disease. Who is to pay for it?

   I muse, why so? Is that because someone related to the government has those conditions? Why not? 

Private hospitals are like service provider units just like shops where operation, consultation, and treatment are the commodity. They run their own business by servicing your body parts.

The name of my disease sounds euphoric and when you start explaining it resembles deadly babble where the prognosis is like a psychic scream. The oddity of my lingering illness is it's larger economic implications unless you are filthy rich. 

According to my experience government hospitals are breeding-ground for germs, bacteria and viruses and being immunocompromised, seeking treatment in government hospitals is welcoming a death sentence. 

Moreover, the treatment 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. I can't leave the doctors familiar with my case.

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 own good and fame. I got the opportunity to choose between good and better doctors four times in my life. VHL being a genetic form of cancer patients need to battle a series of tumours throughout their life. But I have known patients who couldn't face it after two surgeries. Businessmen with family support have survived but I have survived only with my mother's mettle and might. Few friends and well-wishers come but,

Prettify, nor falsify no one,
They are but for a season,
Gathered to escort the lost one,
By way of cosmic expression.

I have shucked off the label of “victim” and acquired the title of “warrior princess” and while I strolled down the street of life as each year unfolded I realised we have been given just one life, one existence and it's the way you live your life that makes you remembered. I don't know if there is an afterlife, but if there is I'd love to be born again until then it's a myth and will walk this life till the end of my time and craft out a story about my existence that will last.

But all I have to say is that everyone is not born warrior or fearless to weather the storm. Many times I come across people how I faced so many surgeries or how I accept it, I feel do I have any choice? I think that I experienced horrors that would give most people nightmares for life but the thing is if you face serious issues from a younger age you don't cringe inside or give up on life. The older you get without ever having a real problem you don't know how to handle it. Starting early gives you a perspective if you don't die first.

Life is a game of chance;

Granted once;

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.

The society with its decayed discriminations and meanness of spirit should change its thoughts and attitudes,  improve it, set it right where it was wrong. The theme of the doctor’s bill should inevitably change.

The meanest, greediest, cruellest, lustful understand only their own troubles and see their own perspectives. Everywhere there's some chaos and uproar but everyone is leading a filthy life never cleaning up the dust settling in layers.  With a few dead trees surrounding their lives, every single person seems to be the mirror image of the other, living in a mixture of the garbage but calling themselves aficionados of life. I ask you, My Lord, what do they perceive life is? I think for life and lust are synonymous.

Progress is a matter of intent and foresight, if everyone is granted their rights, and treated equally then will come true freedom and independence.