Purpose of life

 

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 tumor surgery, I was diagnosed with tumors compressing and displacing hepatic veins, hemorrhaging 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 jewelry 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. 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 colors 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 tumors 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 Gospels. 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 color 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 tumors in the world...leptomeningeal hemangioblastomas ...between 1902 and 2013, approximately 132 cases were reported...Ga-DOTANOC PET-CT based SSTR imaging because VHL syndrome associated hemangioblastomas frequently express SSTR confirmed the true nature could be seen and the diagnosis. 

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 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

Mrs.Monika Thakur

CMC2, 702,Supertech, Capetown, sector 74,Noida

9718805105"----- Although the English in the email wasn't up to the mark of a teacher I was cheered.

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 colors and it hurt me so much.

Later she said she's taken the printable pdf and circulating and selling it to his students without me giving it. 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 center 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 10 kg 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.

Like every other lady Everywhere there is a glimmer of hope. 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 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.

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 Gospels.

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 rigors 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 tumor.

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 tumor, 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 dragging my feet I went to the hospital.

Before he was put into ventilation for 9 long days he told my brother "take care of Didi".  He was so concerned about me 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 liver 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 his mother for help, to give him his inheritance so that he could save his daughter's life. She turned her back, weeping crocodile tears and telling him that she would ask her youngest son about it. My father’s jaw dropped. He was the eldest and the most dutiful son and had blind obedience towards the family and now his mother was turning her back on him!

Here my life with fairy tale parents turned into a noir story. 

When my father asked for his inheritance, the dragon uncle said that he had none because his portion was sold out to the South Indian singer celebrity who was our tenant. They denied even the money of my Grandfather and the jewelry.

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 tumors which were hemorrhaging 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 labored 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 tumors 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 tumors 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 tumors, 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 tumors and required a cyberknife I felt for my brain tumor 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

I have the rarest brain tumors... Between 1902 and 2013, approximately 132 cases were reported. Few studies have reported leptomeningeal involvement in sporadic HB or in HB associated with von Hippel­Lindau syndrome.

This cool video will give an idea rather than heavy words but there is a subtle difference. 

LMD

Then one of the tumors made me blind with the right eye, I had kidney cancer, incisional hernia repair which led to debridement, bilateral Trigeminal neuralgia, a problem during swallowing and talking, and voice becoming hoarse. I feel he is around me protecting me, providing for me, caring for me. We are still together.

Slow toilsome journey in the darkness

A test of inner strength awaits as the pressure builds upon the nerves and various problems build-up which may exhaust my energy with the approach of the winter months and a certain bored feeling sets in let alone the loneliness. 

I had a liver transplant owing to several tumors in the liver which could not be taken out individually causing excruciating pain due to frequent hemorrhages in 2008. The largest lesion caused splaying of the portal vein around the lesion. Hepatic veins were compressed and displaced by the segment 4&8 mass lesion. I had two episodes of bleeding and in the last one asked the doctor to get euthanasia done. Bleeding in the hemangioblastomas required hospitalization and was excruciatingly painful.

Certain medications are nothing short of miracles for the patients who need them. Medications such as anti-rejection drugs, chemotherapy, and corticosteroids are life-saving for many patients, but like many treatments, these pharmaceutical marvels come with side effects. And at least one of these side effects requires some potentially significant lifestyle adjustments.

The side effect in question? These medications may increase your risk of infection. 

In other words, drugs like sirolimus, prednisolone, Cyclosporine, Mycophenolic, or tacrolimus jeopardize your immune system. They are immunosuppressant drugs.

Sounds alarming, but what does it even mean?

What does it mean if a drug is an immunosuppressant? I have come across people who have confused it with immunotherapy.

Whereas Immunotherapy is a type of cancer treatment that boosts the body’s natural defenses to fight cancer. It uses substances made by the body or in a laboratory to improve how your immune system works to find and destroy cancer cells.

It means the medication has the potential to interfere with the processes in the body that prevent infection and this interference is what allows the medication to work.  

How and why this happens depends on the particular drug. In general, however, the medication causes all or part of your immune system to “turn off” so that your body doesn’t go into attack mode, waging war against whatever it sees as a foreign invader. 

 This almost implies that if you are taking some of these medications you will fall ill every time you pass by someone with the sniffles along with the big stuff, like the flu or tuberculosis. Are you going to need to live in a bubble from here on out?

What are the side effects of immunosuppressants?

Fortunately, in most cases, an actual bubble won’t be necessary. Unless there's a pandemic going on and you are ill-fated that the army to protect you is disarmed. However, it is extremely important to understand the outcomes of living with a compromised immune system so you can protect yourself.

Side effects of immunosuppressant medications may include gastrointestinal problems like diarrhea, nausea, and vomiting. However, the most serious side effect of taking an immunosuppressant is the risk of infection.

That could mean catching every single bug your family member brings home from work or the very real possibility that a flu diagnosis will land you in the hospital. You are also more likely to experience complications from foodborne illnesses, bug bites, and environmental hazards (like mold). Oh, and you know all of those recent H1N1 outbreaks? You could be always at risk. Immunosuppressants also leave you at risk for very rare and difficult-to-treat infections, molds fungal pneumonia, and certain types of lymphoma.

Being diligent about basic hygiene procedures such as hand-washing is the only way out.

 Everyone knows that hand-washing is the best thing you can do to avoid getting sick, but it is even more important for those who are immune-compromised and anyone who comes into contact with them. 

Make sure to wash fruits and vegetables.

Avoid people who have active infections (don’t be shy about telling people to keep their distance, either). 

You may need to wear a mask

 at times (if you are on an airplane and people are coughing, for example), and it is also wise to avoid large crowds. 

Staying up-to-date on all of your vaccinations is extremely important. 

Adopt healthy lifestyle practices (get plenty of sleep, exercise, and eat a healthy diet). 

If you think you might be sick or show any signs of infection, call your doctor immediately. The wait-and-see plan that applies to so many other people does not apply to the immunocompromised population. This is especially true with fevers.

If there is a high fever, they need to run to the emergency room so they can see a healthcare provider but I got a mysterious fever when I got to the emergency room of Medanta the medicity at 2 am in the morning because I was getting tetany and needed calcium drip.

Soon after discharge from the hospital after liver transplant, I got viral infection varicella and was treated with Zovirax...my experience of first viral infection.

It was my plight when I was diagnosed with an RCC H1N1 that was raging in Delhi and I had to commute to different hospitals because Medanta doctors wanted to do a needle biopsy before taking the tumor out. I would have gotten seeding that way and metastasis in the process would eventually have occurred. I traveled to different hospitals and got a cuckoo fever which wouldn't go. I couldn't get my blood tested for H1N1 and the clock was ticking because my RCC was 2.8 cms just a little below the threshold. The surgery was confirmed with Dr. Gogoi at FMRI but still, he said he can't perform surgery with an infection in the body. 

By Divine will I thought of calling Dr. Randeep Guleria, he gave me some medicine over the phone and green cough syrup and I believe it's his experiences and expertise that I recovered and became ready for the surgery.

I always wore a mask when I went out. I carried and still did till before the lockdown a hand sanitizer in my handbag. You can never take enough precautions. 

During the winter months, my brother came to spend time with us. He has a sinus problem and gets a cough and cold because of the weather change the whole winter, I had no sleep spending time coughing away.

The ultimate example of the risk of infection is getting MDR-Tb. I was losing more weight than the exercises I was doing and the food I was taking. I never had outside food but still, the doctors didn't think of that. Two years after the liver transplant I had a bewildering high fever which puzzled the doctors. After three months of continuous fever with a swollen lymph node made the physicians think. The lymph nodes biopsy showed TB infection(AFB+). More than 4 months of being on anti-Tb-treatment showed lung condition worsening. HAIN test confirmed that the bacteria is resistant to Rifampicin, Isoniazid and ethambutol hence a change was implemented but it didn't work and I stopped walking due to immense pain pelvis onwards. Head and Neck surgeon, Dr. Handa removed the TB bacteria-infected lymph node, did surgery of lymphadenopathy.

Dr.Randeep Guleria of AIIMS changed the medicines to highest degree antibiotics and the expensive drugs cured MDR-Tb but till this day I need a walking stick to walk and can't do most of the daily jobs for which I have to depend on her 69 years old mother and I can't climb stairs.

All the time I use tissues, to wipe my face, eyes, nose because I was advised not to use a handkerchief as if you fold it in and use the other side the infection will be back and I don't have the power to fight them. My faithful troops

 have been disarmed or perhaps just turned off. I always wash my hands properly but in the freezing winters or when outside use hand sanitizer to control my infections.

I have the rarest brain tumors... Between 1902 and 2013, approximately 132 cases were reported. Few studies have reported leptomeningeal involvement in sporadic HB or in HB associated with von Hippel­Lindau syndrome.

Because no case of de novo development of disseminated HB without previous surgery has been reported, it is strongly suggested that the spillage and spread of tumor cells through the CSF space may be an origin of hemangioblastomatosis in patients with a genetic predisposition to the condition, Care should be taken to avoid tumor cell spillage during surgery.

When another mass was illegally cultivated on top of the kidney, a Ga-DOTANOC PET-CT based SSTR imaging because VHL syndrome associated hemangioblastomas frequently express SSTR confirmed that the floating lights in the patient's brain are hemangioblastomas. With this, the true nature could be seen and the diagnosis was confirmed.

 A biopsy isn't required for diagnosis as it may cause meningitis and blood loss thereby cell spillage.

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.''

There is no data on the competence of the surgeons and equipment used in the initial CNS surgery so trying to determine if cell spread was caused by any incompetence during my brain surgery (craniotomy) in 2006 would be extremely difficult if not impossible to prove beyond a reasonable doubt. The fact that the physiology of each tumor is different and the number of cases is so small means that an accurate comparison of surgeons is impossible.

I get stereotactic radio-surgery before the growing tumors 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 because  I was diagnosed with an RCC ( kidney cancer) at the same time.

Trigeminal neuralgia (TN), also known as tic douloureux, is a disorder of the fifth cranial nerve (trigeminal nerve). It is characterized by attacks of intense, stabbing pain affecting the mouth, cheek, nose, and other areas on one side of the face. Sometimes there's a constant dull aching or burning pain. Both types of pain can occur in the same individual, even at the same time. In some cases, the pain can be excruciating and disabling. If untreated, TN can have a profound effect on a person’s quality of life. In most cases, TN develops due to a blood vessel pressing against the trigeminal nerve, but sometimes no underlying cause can be identified (idiopathic). It can also be idiopathic, due to compression of the trigeminal nerve, or can occur due to a known underlying cause such as a tumor or multiple sclerosis. TN can usually be managed through medications, surgery or injections, or stereotactic radiosurgery.

Despite the striking strength of this pain, TGN isn’t particularly well known. Most people never hear of it until they or a relative develop it. 

Sometimes the pain comes out of nowhere with no trigger at all. While a classic attack is sudden and sharp and then gone altogether, sometimes a low-grade ache or burning pain will persist in its wake for an hour or more. In some patients, the constant aching, burning pain is their initial complaint.

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 the 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 lightning 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 went to the neuro-ophthalmologist thinking about my optic nerve tumor but he said the optic nerve doesn't cause pain and it looks like trigeminal neuralgia and I should visit my neurologist immediately. He did his examination and said it was TGN and asked for an MRI. I underwent an MRI scan the next day and it confirmed the diagnosis of trigeminal neuralgia...“ Thin vascular loop of the superior cerebellar artery (SCA) abutting cranial aspect of the right trigeminal nerve at the root entry zone is noted.”

If you experience these cataclysmic episodes, your life will change forever.

Branches of Trigeminal nerve

• The mandibular branch( bottom) of the trigeminal nerve serves the 

1. the lower jaw, including the lower teeth, lower lip, side and front of the tongue, lower gums.

1. part of the ear. 

• The middle or maxillary branch serves the 

1. the upper jaw, upper teeth, and gums, upper lip,

1. cheeks

1.  palate

1.  sinuses

1.  temples, and most of the nose.

• The upper or ophthalmic branch serves 

1. the forehead, eyes

1. bridge of the nose.

There can be some overlap, especially in the eye itself.

It is also known as"suicide disease” as a result of those who killed themselves to escape the pain.

I had a subtotal thyroidectomy from which emerged HypoPara.

Hypoparathyroidism is a rare endocrine condition in which insufficient or inactive levels of parathyroid hormone (PTH) are produced by the four tiny parathyroid glands in your neck.

It may be due to a congenital, genetic, or autoimmune disorder that affects the function of the parathyroid glands or, more commonly, it may occur as the temporary or permanent result of surgery to the neck where there is removal or damage to the glands.

Insufficient PTH leads to low calcium levels in the blood, or hypocalcaemia. It causes electrolyte imbalance and can be a life-threatening condition if untreated. 

Why is calcium so important? Calcium is vital to life and affects every cell in the body. Most people know about teeth and nails in connection with calcium but its effects are on the whole body - nerves, muscles, and organs. It helps blood to clot and is important in energy production. Calcium is crucial to us which is why the body has special mechanisms like the parathyroid glands to keep calcium levels constant. 

Treatment with vitamin D analogs and calcium supplements is not ideal and can lead to long term renal problems. Calcium levels fluctuate but home calcium testers are not available so monitoring this condition can be challenging. Until 2015, Hypopara was the only endocrine condition without its own replacement hormone. Injectable parathyroid hormone is now licensed for use in the treatment of hypopara in the USA but is not yet available elsewhere.

Recent problems are swallowing and tackling. I have lost weight up to 10 kgs and if I am forced to talk I get pain in my larynx area and my voice changes. 

Everywhere there is a glimmer of hope. Hand-holding fantasies are not there in my life, rather everyone would like to swat me out of the way. Sometimes I feel the need for someone, not to take away or bear my pain but just to support and care about me. From my childhood journey to middle-age, I became a warrior but nobody stood by me. Life was much different for me, when I needed support from everyone, I rarely got support from anyone. Thanks to the internet and social media when I need support few people don't turn their faces. The rest peacefully ignore the agony of others. It includes friends, family, school teachers, everyone.

  There's always a glimmer of hope. There is cancer, depression but everyone can get out of it. The glory and brightness of life! When you arise in the morning, think of what a precious privilege it is to be alive to breathe, to think, to enjoy being alive so please don't keep wringing your hands.

My mother is a different being altogether. Granny tranny used to make her do heavy chores when she was pregnant and she lost her first child due to the heavy work she was coerced to do. She worked too hard to bring me into the world. She cares for me

" I feel that living with multiple rare diseases with an overwhelming battle is my plight of my child, the journey with rare disorders. I believe perhaps surviving those ill-fated surgeries where the doctor gave a deadline or said " Everything is in God's hands" because she has a greater purpose in life. For that,  to live this debilitating life more than it has been predicted. We need support from everyone, it's true we rarely get support. To stay true to our goals in life, we need true, honest, support."

Bookversery of Midnight

 I am attributed my one-way ticket to this world. In all those miseries, Mum and daughter just kept afloat. By reading, I could live more intensely. I never did sink into depression and listlessness and decided to write a book, a refreshing, sweet detective story series for all ages. 

Few people reviewed that since the tales are based out of Kolkata they are reminiscent of Byomkesh Bakshi but they were a whole new ball game. Byomkesh Bakshi and Ajit are reminiscent of Sherlock Holmes and Watson but here it is Mum, a caregiver to her ill daughter with her peculiar alertness with an unexpectedly brilliant and problem-solving mind and her observant nature leads her to notice things overlooked by police and by those little things she solves cases and helps the police. With her schoolgirl type haircut, she enjoys the guise of a harmless little lady. Princess doesn't dwell on her illness and being intelligent she helps Mum think up the meanings of riddles.

The book is a children's book as much as Agatha Christie and Enid Blyton's are but it is different because the primary characters of the series and a few situations are drawn from my own life enhanced by imagination. 

I have known "seasoned readers" being happy with a deeper sense of satisfaction with Enid Blyton, Nancy Drew, Roald Dahl whose writing appeal to humans of all ages about emotions and difficult topics with so much care and humor. I don't count myself amongst those timeless authors but I do deserve some credit for my multiple rare diseases, brain tumors, lancinating pain, and partial blindness, I didn't sit back and relax. I wanted the world to sit up and take note Payel Bhattacharya existed. 

In Woody Allen's words "So often people think they grasp reality when what they're really responding to is "fakeositude".

Actually what they mean in a thrilling novel is romance, thrill, and violence.

So, half- laughingly I thought of writing a novel with some difference.

The story starts with the tale of a missing girl. Police are interviewing everyone -- parents, elder sister, even little brother who is a mere toddler. Dr. John Brown who used to treat her for her mood disorder and an anxiety problem is of the opinion that he was thinking about stopping her medicines because she was cured by her mother's profound love. Police are doing their best to find her by announcing the tragedy in every newspaper, every news channel going from person to person and every child in the school and making inquiries because the lost child's father is a secretary to the state minister and they can't fail him.

In her grief, Nina enters her missing child Mina's room. As Nina advanced towards the window she saw a faint blue light coming through the window falling on her closet. Everything in the closet was in a disarray but she found something in the rear part jammed between the closet and the wall where light played across in speckles and spots. She found her diary and thought of reading it as it might throw some light on her disappearance. The diary seemed to tell her something special. 

Nina discovers her child Mina has the unusual power to see dead people and they often visit her often around sundown and how the thing started. She faced lots of problems in school but Mina was smart enough to research various civilizations and their beliefs in ghosts.

One night she was visited by a handsome man when she had a sudden vision. The next time the Ghost appears he tells his story about treachery and in a counter-terrorism mission to hunt down who is selling agency secrets and how he was betrayed and killed. The ghost seeks help from her and tells his entire story and in between Mina falls in love with him. He explains her not to be silly because they are both in different worlds. The story goes on with the visits of the ghost after sundown and leaving with the first ray of light and Mina's school and family events. The ghost tells about his secret mission and how after he acquired the proof he was murdered. Since then he was in search of a necromancer or someone who could see ghosts and help him. Together they acquire the proof and send it to the person who will take the right action.  The diary ends here and a note is added that it is delusion or dramatization and every experience is reality. It was written keeping in mind that in the process of meeting with the ghost and helping her if something happens to her reading it others might know the truth.

Not being able to know what happened to her daughter Nina felt the diary had some soul within itself and wanted to communicate with her. She and her husband found that every bit of it is the truth from news and wanted to meet Father Peter Marshall, a professor in parapsychology who acts as a medium. Seeing her mother in grief, elder sister Gina starts investigating with her boyfriend. Mina's friend June tells her she was popular and none hated her but she tells of the incident of psychotic Bala whom Mina challenged in a basketball game and he lost but swore to settle the score. Here The  Father steps in and explains to Mina's father that there's been a foul play and she has been killed but she's around them. They sat in a  séance and called the spirit. Mina appeared and confessed that a brat put a trap for her and how she had a violent death but fought till the last moment. Mina's father put in all his efforts to get proof against the culprit and when they entered the room they saw that he was already dead by asphyxiation but his eyes bulged out wide with fear. Mina's spirit appeared to her mother Nina to bid farewell. Mina left for the fabled land of heaven together with Mr. Ghost.