Balancing abilities of body and mind

 

There are countless challenges of having a disease. I have the most unusual diseases known to humankind and my strife is intense, grave, tireless where you don't have to worry only about healing because recovery is a tough process that takes time and patience leaving scars behind but you have to bother about financial demands to get a proper diagnosis and the desired treatment and surveillance.

The name of my diseases sounds thrilling but when you start explaining, they resemble deadly babble where the prognosis is like a psychic scream.

I was diagnosed with a rare disease von Hippel-Lindau or VHL. It is a genetic form of cancer. VHL patients battle a series of tumors throughout their life. VHL may occur in up to 10 organs of the body also there is a possibility of neuroendocrine tumors.

My story is of riches to rags, I was born into a well-to-do family but those lifeless relatives...when I needed them most…the foxy ones conspired and deprived me, other relatives… the rabbits turned tail and fled, fearing I might ask them to help me or stand by me.

 I wouldn't have survived unless I had money in a crisis. 

I let those walk away who didn't want to stay because my destiny is not tied to them. 

Family is not about blood bond, it's about willing to hold your hands when you need them most. 

After surviving the landmark liver transplant, with the funds acquired by donations, there happened a woeful incident that killed my father because of the cunning way my uncle who took our house from us. To save my life, my father couldn’t afford his bypass surgery and passed away leaving us penniless and homeless. 

This was a regrettable incident and it was then that my real tough times began. It was the greatest tragedy that ever happened, a serious occasion when we had two choices ...death or preservation of life.

 Instead of shedding those ferocious tears in the crook of my arm, I have drawn out my sword in the sunshine to vanquish and conquer all the evils of my life. I have never been frustrated beyond measure and chose to be a Warrior Princess.

Not only we faced shocking poverty where we didn’t have money for food the next day, but I acquired MDR- TB living in lousy cramped houses under immunocompromised conditions and changed houses 7 times hounded by landlords. 

My brain changed in chemical composition when I understood the frightfulness and the oddity of my nasty lingering illness and its larger economic implications.

 When in poverty, you face medical embarrassments, the humiliation of asking for financial help, physical suffering which is always there money concerns for food, medicines, and rent.

Sometimes people provide help, sometimes block me or stay mute as if I don't exist and some hesitate. 

Somehow we get by with arranging all those expensive immunosuppressants or anti-rejection and all other medicines every month and laboratory and radiological tests and getting surgeries at the nick of time, but uncertainty remains. 

 Somewhere in the Constitution, I have been given the right to live but I am being denied that.

 I am not the one to commit suicide because I love life even after getting 15 surgeries, some of which were life-threatening ones.

 My brain tumors are the rarest ones from 1902-2013 only 132 cases have been reported globally. A fellow remarked after he saw the picture of the scan of my brain tumors

" you have more tumors in the brain than people have lice in hair.''

I can't describe the agony I face. But still, I feel life is delightful.

 I am partially blind. I write because it's my passion. I have authored 3 books, The adventures of Mum and Princess which is a collection of detective stories, Midnight is a novel regarding a paranormal thriller with a dash of spy thriller -- and my survival story - Warrior dies dancing..that's who I am; not only that  I have written about VHL in NatureIndia and an article in Sahitya Akademi. I maintain a blog known as zebraspeaps.blogspot.com and am currently working on another thriller book. I also write for the Times of India digital.

I fought kidney cancer and the rarest type of brain tumors and I'm still fighting. I hear people getting out of cancer situations but there's no way out for me. I have to fight till my last breath. 

 My looks don't betray the nature of my disease. 

A patient ought to be always in bed groaning and wailing about her disease--- these preconceived notions prevent people from thinking about the medical attention I need,  the benefits that I deserve & that I need to live with dignity. 

Assistive devices, such as walkers, wheelchairs, etc can be an obvious signal that the person has a disease. Although I too need a stick for support to walk, people can't believe that I have a chronic illness which is "invisible".

Perhaps if I lacked a limb, society would have treated me with more charity. 

An invisible illness means that a person can be continuously sick, but may look just fine on the outside. But they hardly realize what I lack inside. Lack of social support is an additional hardship.

 

My heart stopped jumping with joy, enjoying the elixir of life, and as I learned to shed tears of wicked pain hugging my mother at night when the soul screamed out with the agony and howling in pain. I hugged my mother and muttered and cried as pain then came through loud and clear as the pain of my bilateral trigeminal neuralgia wrung the energy out of me and I became pain-worn and didn't feel life is as beautiful. But I still had a bit of vitality left and was strong enough for the journey ahead.

All which is needed to lengthen the period and quality of life is a good doctor who is thinking about your health and happiness and not treating you like a guinea pig and not working for his good and fame.

Even the most brilliant medical mind can make mistakes and a few it was when their negligence led to the other doctor saying "Everything is in God's hands" because they are not God themselves. They use their acquired knowledge and skills to save a life. I keep myself well-informed to avoid such hazardous effects and don't treat the words of a doctor as gospels.

This is not sentimental madness, this is the pain but I am a mermaid without tears. However, I  lack a vital emotion, fear which made me survive several life-threatening surgeries with a smile on my face even when doctors said: " Everything is in God's hands". I don't know how to cry but when Trigeminal Neuralgia attacked me, it taught me to cry.

I am facing a painful condition known as trigeminal neuralgia where the pain is so intense that you feel a live electric cable is placed against your eyes, cheek, head, jaw, teeth and that's why it's known as the suicide disease.

I got a cyberknife on the right side but the left side remains. I live with my 67-year-old mother and she is my caregiver. Our only income is her Rs 7000 pension and in this COVID19 crisis we are facing a lot of hurdles, not getting my treatment in proper time and food I need to keep my brain and other organs healthy and also with rent but I believe God has made me with some good end in mind and is watching over me and the wreckage of my life will be sorted out by him. 

 I want my tangible trace existing after I am gone.

There's a good chance of getting old with silver hairs if my venerable disease gets an opportunity for good treatment, my potentials are realized and my battle with the selfish people ends. My life will be perfect and trouble-free. Every day I look at myself in the mirror I see a badass zebra. Why do zebras have stripes by the way? Because it is stylish, classy, and not tacky or unfashionable. Well, why with so many rare diseases I am a Unicorn, why not?

Glossopharyngeal neuralgia

 

The 12 Pairs of Cranial Nerves 

  

1. Olfactory (smell) 

2. Optic (vision) 

3. Oculomotor (movement of eyes and focusing) 

4. Trochlear (movement of eyes) 

5. Trigeminal (sensation in the face, jaw muscles used in chewing) 

6. Abducens (movement of eyes) 

7. Facial (facial muscles, scalp, taste) 

8. Acoustic or vestibulocochlear (hearing, balance) 

9. Glossopharyngeal (taste, muscles used in swallowing, sensation in the pharynx and middle ear)

10.  Vagal (movement and sensation in pharynx and           larynx; sensation in abdominal organs; monitors heart rate, blood pressure, and digestion) 

11.   Accessory (muscles in pharynx, larynx, upper neck, and upper throat) 

12.   Hypoglossal (movement of tongue)

Glossopharyngeal neuralgia (GPN) is a somewhat rare condition characterized by severe, fierce episodes of pain localized to the external ear canal, the base of the tongue, the tonsil, or the area beneath the angle of the jaw. This pain is many times confused with Trigeminal Neuralgia and mistreated. It is related to hyperactivity of the glossopharyngeal nerve. GPN is rare compared with TN. The pain affects the sensory areas corresponding to the glossopharyngeal neuralgia with a branch of sensory vagus nerves. GPN consists of spasmodic, momentary, and severe sharp pain in the posterior area of the throat, tonsillar fossa, base of the tongue, ear canal, and areas inferior to the angle of the mandible. Generally, the pain persists for seconds to minutes and is often triggered by chewing, coughing, yawning, talking, and swallowing. Since Glossopharyngeal neuralgia is a relatively rare condition There are various diagnostic and management dilemmas.

Glossopharyngeal neuralgia is believed to be caused by irritation of the ninth cranial nerve, although in most cases, the source of irritation is never found.

Possible causes include:

• neurovascular compression: blood vessels abutting the nerve root entry zone of the glossopharyngeal nerve

• tumors at the base of the skull

• tumors or infections of the throat and mouth

Radiographic features

The main role of imaging is to identify potential causes at the base of the skull.

CT

CT is unable to visualize the nerve but can delineate the pars nervosa of the jugular foramen.

MRI 

MRI is the ideal way to image the nerve which can be seen particularly well on heavily T2 weighted thin section images (e.g. FIESTA/CISS). Contrast is also necessary to assess for abnormal enhancement of the nerve or surrounding structures.

​Additionally, MRA is required to assess for a compressing vascular loop, most commonly found at the nerve root entry zone.

Historical Aspects       

In 1910, Weisenburg first described GPN as a cause of Tic douloureux when a patient presented to him with lancinating pain of the throat and the ear. In 1921, Harris coined the term "glossopharyngeal neuralgia"  describing it as a painful syndrome characterized by paroxysms of unilateral and severe lancinating pain in the distribution of the nerve, which may be aroused by stimulation of trigger points in regions of the nerve. The pain may be spontaneous or precipitated by a variety of actions that stimulate the region supplied by the glossopharyngeal nerve namely yawning, coughing, swallowing, and talking. In 1933, Reichert recognized the tympanic branch (Jacobson's Nerve) of glossopharyngeal nerve as a cause of ear pain in GPN. Wortis et al. (1942) first described GPN in association with cardiac arrest and syncope that are unusual presentations of GPN.

GPN is a mixture of cranial nerves that have somatic sensory fibers from the oropharynx, mastoid, middle ear, and Eustachian tube, and posterior third of the tongue. The middle ear and mastoid have a sensory supply of glossopharyngeal nerve along with the tympanic branch or Jacobson’s nerve. It also receives special sensory fibers for taste as well as chemoreceptor and baroreceptor afferent input from the carotid body and carotid sinus. Stylopharyngeus muscles are supplied by the motor component, and the parotid gland is supplied by the parasympathetic secretomotor supply. The nerve of Hering is an important branch of the carotid sinus branch, which conveys chemoreceptor and baroreceptor information centrally for circulatory reflux function and may be accountable for the arrhythmogenicity of GPN.

Classically, it is described as a severe transient stabbing pain experienced in the ear, the base of the tongue, tonsilar fossa, or beneath the angle of the jaw. However, the location of the pain can have significantly varied distribution and overlap amongst the nerves supplying the face (trigeminal, vagal, facial). The unusual presentations are cardiac arrhythmias associated with pain episodes, fear to eat (which may be the precipitating cause for pain episode), and syncope.

It must be emphasized that GPN is not as uncommon as reported in the literature due to difficulties in diagnosis, unawareness of the disease and more so with the increasing number of patients with styalgia (pain due to elongated styloid process). It is often compared with trigeminal neuralgia in presentation and incidence due to significant overlap of symptoms and thus causing a diagnostic dilemma.

GPN may be idiopathic with the absence of any obvious lesion. Most cases are mainly recognized as glossopharyngeal nerve compression triggered by a vessel at the root entry zone of the brainstem. Idiopathic causes may be vascular decompression and/or central pontine dysfunction. The secondary cause is a noticeable lesion that includes trauma (skull base fracture, penetrating injury), post-radiation, neoplasm (skull base, cerebellopontine, brainstem, pharynx, tongue, tonsil, metastatic head, and neck tumors), infection (tonsillitis, pharyngitis, petrositis, arachnoiditis, para pharyngeal abscess, and tuberculosis), surgery (post-tonsillectomy, post neck dissection, and post craniotomy), vascular malformations (arteriovenous malformation, fusiform aneurysms, persistent hypoglossal artery, and dissection of the vertebral artery), demyelination (MS), and Eagle’s syndrome as well as others which include direct carotid puncture, choroid plexus overgrowth, and hyperactive dysfunction syndrome. This type of GPN is usually accompanied by numbness or pain around the affected area.

The glossopharyngeal nerve is a mixed cranial nerve with both sensory and motor components. It receives somatic sensory fibers from the oropharynx, posterior third of the tongue,  Eustachian tube More Details, middle ear, and mastoid. The sensory supply to the middle ear and mastoid passes along the tympanic branch or Jacobson's nerve. The glossopharyngeal nerve also receives special sensory fibers for taste in the posterior third of the tongue as well as chemoreceptor and baroreceptor afferent inputs from the carotid body and carotid sinuses respectively. The motor component supplies the striated muscle stylopharyngeus and secretomotor parasympathetic fibers to the parotid gland. The other important branch is the carotid sinus nerve (Nerve of Hering) that supplies the carotid body and carotid sinus. It conveys chemoreceptor and stretch baroreceptor information centrally for respiratory, circulatory reflex function and may be responsible for arrhythmogenicity of GPN.

Life-threatening complications of GPN

Harris et al. (1921)  reported that GPN could be associated with cardiac dysrhythmia and instability. This relationship is well-accepted and has been documented by many authors. The various reports and case studies have been compiled and summarized by Ferrante et al. Intense irritability and hyper-stimulation of glossopharyngeal nerve feedback onto the nucleus of the tractus solitarius of the midbrain and via collaterals reach the dorsal motor nucleus of the vagus nerve. This activation of this abnormal loop during severe neuralgic pain would be responsible for the heightened vagal response as cardiac dysrhythmia, bradycardia, and hypotension, with cerebral hypoxia, slowing of EEG activity, syncope, and convulsions. Convulsive movements, limb clonus, automatic smacking movements of the lips, and upward turning of the eyes are signs of cerebral hypoxia induced by the bradycardia.  The cardiovascular phenomenon is seen during the pain attack or immediately following it. Both pharmacotherapy and surgical treatment eliminates these. There is a subset of patients with demonstrable cardiac manifestations without typical neuralgic symptoms who have responded very well to glossopharyngeal nerve avulsion or MVD. Such syndromes have been called non-neuralgic GPN,  in recognition of the fact that glossopharyngeal nerve irritability may not always give rise to pain.

Thus, "The Adventures of Mum and Princess" was created

 All I can say is that I was born with a book in my hand. Reading was not only my pastime, but it was also my passion, my obsession, and fodder for my active mind. Books stimulated my brain to switch on the thinking process and the reasoning and led me to the peak of happiness.

 

I started with Enid Blyton and enjoyed her Famous five and Secret Seven series, which enhanced my vivid imagination to a brilliant and powerful one. 

By this time I had read all Agatha Christie and Sherlock Holmes. I was reading as many books as  I could lay my hands on. Albeit damn interesting, books helped me pick up some confidence and optimism and admire how they made me admire the power of deduction, forces of nature, rain or sunshine, wind, or quietude. I fell in love with their novels so much so that an idea lurked in my mind that one day I will be an author.

I want to live up to my dreams and aspirations. I desire to become an established author.

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

 as I told her,  that 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 my 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 which 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 thought, how would mum look like in my novel? What would a short stout ageless lady look like?

 

Then I thought although I have an Indo-European story in mind, it looks rather Anglicized.

Then came to mind that first I ought to decide upon the central characters like Sherlock Holmes had Dr Watson as his companion and Poroit and Hastings went on expeditions.

 I wrote a come-to-the-battle sort of poetry, "Warrior Princess" after which the flames began, the quest for knowledge...life became magical. I had stopped thinking about my diseases and in the uneasy days of life started to live! Live the wonderful life that is in me! I felt that rare pulse of joy and was transfigured with joy. An ecstasy of happiness dominated me. I had also written for Sahitya Akademi with my painful Trigeminal neuralgia so I decided to play sidekick. 

Then again, I thought of the way Princess would look. 

This was the first thought and it stuck. Now all my life I have been clinging onto my mother for hopes, dreams, love which are essential for survival. So the entire picture of Mum and Princess happens to be

 

as I started writing more characters came into my mind. The Varma-Sharma detective duo is the avatar of Thomson and Thompson. Their stories about detection are never known before and they are told in the department in attempts at jocularity.

Though the two detectives were not related and it was only a coincidence that their surnames rhymed, they were much attached. They were well-fitted for their jobs and were known far and wide as the most kind-hearted and successful detective teamed up with Mum and Princess, of modern times. 

Princess is intelligent and she helps Mum with her cases. She also amuses herself by her mischievous talk with Arin and Varma-Sharma detective duo.

Arin, who is the brother of Princess, is the inspector in the homicide department. Arin is dedicated to his work and performs it with integrity. He depends a lot on Mum’s deductions. Everyone in the police headquarters holds Mum in high esteem and sometimes asks for her

"The primary characters of the series and a few situations are drawn from the author's own life enhanced by imagination and the stories carry messages." 

I wrote six detective stories.

In the first story... " Girl at the end of the telescope", one day, Princess takes out her telescope and aims at the clouds and stars but instinctively peeks through it into a room's window opposite her room towards opposite flats in a different society in the next buildings. Though she knows that it's not a good manner to watch into other's houses without consent, she continues to do so. She happens to see a beautiful young woman. As a task of watching that young girl, Princess sees something wrong and horrific and one day and the girl being murdered. She immediately informs her mother, they complain about the incident to the police. Here is the appearance of the Varma-Sharma detective duo and solve the case with great intelligence from Mum's side.

The second story, " Strength of will" of a businessman is a murder mystery in the 'Aditya Villa' located in the locality where Princess and her mother live. Complicated with the mystery of a double murder regarding an estate which is solved by Mum with the help of riddles left by the deceased. 

Next is a story, "The whim of time" is a mystery revolving around reincarnation. Here's a new character, Princess's brother Arin who gets transferred to the city as a cop and gets involved in the mystery. They solve an old unsolved murder case with the help of a boy remembering his past life in allusions.

"Sweeter than revenge" is an engaging novelette where an observant lady, Mum with a passion for seeking the truth, goes on a holiday to a hill station, Phulmora with her ill but intelligent daughter Princess and son who is the head of the homicide department. There, quite unexpectedly they encounter a locked room mystery. Mum and Princess with the help of the police solve the baffling crime which puzzles everyone until the very end.

In " Gambler's odds" Princess is extremely optimistic and Mum and Princess attend a secret organization" Idle talk" which values friendship and relationship. Celebrity ladies gather together on the last day of every month for different reasons and a hand of poker and the winner must tell a real-life story which stirs you awake and remind you of the story even when you go home. The ending is not told until the next gathering. The thrill lies in the cleverness of the teller while telling the story concealing the answer. Here Princess tells a thrilling story full of classic songs and her oratory skills are noteworthy. In the story, a series of deaths occur which seem puzzling because it can't initially be determined if they are murder or accident.

" Mum and Princess in Mystic land" is the last in the series.

It is a science-fiction written in a science-fiction mode. 

This is a historical thriller written in a science-fiction mode. It has dark magic, time travel, kings, treachery, uprisings, mystery and is a perfect blend of everything for a "thrilling read." is an accurate representation. I won't describe the story here as the book should be read without any prior knowledge of its content, You will not be disappointed. Every word that paints each scene in exquisite detail so that you can imagine what is there and follow-through from scene to scene. The characters all come to life. You will be sucked into the mystic land story so that you will want to continue without pausing until you get to the end.

Thus, "The Adventures of Mum and Princess was created.

Contemplations of a warrior

 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.

Although I was born with a disease, I grew up carefree in my abundance. Mum was strict in her manner, in stability. But the loss of control of my father's judgment took its toll.

I, being overly structured and couldn't control my near future and started receiving injuries due to the flow of energy.

During this frustrating phase, I considered paying attention to paperwork and have only trustworthy people around me.

When more than one unwanted change is coming in various areas of life, hope is positive merit and by preparing to correct the steps adapting to the change well, not being sensitive to criticism I can go on in the same path with alacrity.

When God's wave of a magic wand happens in my life it will be a good omen and my luck will truly turn the most positive and most beneficial way. I believe that the wheel of fortune will turn soon.

I will embrace the new beginning and go out on a journey because that's what life is about. I can feel from within that I am on the bluff of a new beginning, a new experience that will keep back all the fear, worry, or doubt.

When I browse the history of my life mentally all my life people pretended to be deaf. Father had done a lot of coaxing and cajoling with her mother, to save the life of his first kid. Ultimately it was tyranny Granny who hurt him most and he perished. He relocated us and we fought and from a victim became a survivor.

I believe in Karma and destiny but I believe in luck too. Being a gambler I took every chance with control determination and willpower.

The Gambler

O Mind! O, Soul!...
The irony of the struggle,
Strange fatigue,
The emotional strain,
Tantalize and torment,
The desolateness of existence.


Weary mind grunts and groans,
Everything feels bitterly cold,
Engulfed in the gloom of doom.


The human scum,
The rotting heart,
Hypocrisy and cruelty,
Cowardice and defiance,
Immensely solitary existence,
The Repulsive individual,
Feels a growing desire for gamely death.

The gambler cries in the sodden life,
Everything is mistrustful, scheming, and vile.
Struck by forlornness, hazed in the maze,
Close to the dicey edge,
Viewing the hodge-podge of despicable mess,
Gleamy eyes ablaze losing everything at showdown,
The fag-end;
Unafraid, unfazed takes chance,
Life is not a choice,  rooted in chance granted once,
Doesn't rue the day till endgame.

Even if hurdles of life are pulling me down I am always fighting against them. We all know life will continue to move with or without me but I won't let it happen 'without me'. I am not immortal but I will live the time I was allotted at the time of birth with positivity, fun, warmth, and vitality.

One day the sun will shine on me giving an optimistic feeling and confidence to draw a bright picture of my life.

I've climbed the highest mountains

I've swum the deepest rivers

You can try them all and find

You are on top of the world

Looking down on creation

Can tell the big difference

Which the world doesn't 

See or admire in you.

Being exclusive some days are spent in soul-searching, introspection, reflection. Sometimes it feels too good to be true to feel so good enjoying but I say believe it after whatever I have gone through in the past with my mother, whatever I have suffered physically I deserve the joy and can assume that my dreams and aspirations will be made true by my guardian angel.

All my life I have been clinging onto my mother. Hopes, dreams, love are essential for survival. Sometimes you have to let go of the past and move on. I believe while recovering better not look back and keep progressing towards the light.

" Doing unto others what you have them do unto you" is the love of helping your fellow man. This way you are creating a cycle of love that is gifted back to you. If you learn to give love, you will receive more in return. I believe that is the law of the Universe.

Despite the uncertain conditions, if you have the skills and potentials, be brave, believe in yourself, master the negative emotions, and forge ahead. That's how I became a warrior princess.

With problems of body parts like the liver, kidney, thyroid, brain, I have always been hopeful that things will be better as God has always reassured me that he will send support in my crisis time.

Better not get stuck believing the way life is now is how it is always going to be. Making positive changes for life experiences for yourself and others will make your life worth it. Death means the loosening of the mortal coil from this life's experience but, may life remember you for long.

I want the removal of my physical pains which doesn't let me eat or sleep or talk. My body's physical health is deteriorating. The energy centers of the body need to be activated by the right person to heal correctly.

Mind and spirit is a sacred temple and when something goes off-kilter in the physical body it gives signal a need for a second opinion in medical decisions.

The unbearable vague pain lingered long without any remission and now I have an excruciatingly sharp tongue pain in the left side and it feels sore but there is no sensitive area there, same with the gums in the left side and my mouth is on fire. As pain wells up my attempt to end it intensifies. The positive energy will certainly mend my nerves.

As I am going through an exceptionally difficult time in my life, learning the coping skills will make me grow and move forward. A healthy body comes from a healthy mind...positive thoughts can keep healing and strengthening my body.

I met a few devils in my life and the important nature of a devil to keep coming back in different forms and comes to put you into a bad situation that you just overcame or to take advantage of you, all done illegally. It is no use to keep seeking answers to " why are they on the planet?"

There are 24 other habitable planets discovered, my appeal is to be transported to one of them. Perhaps there the inhabitants are not so selfish looking for their good but thinking about others, the reason why man is called a "social animal".

Moral bankruptcy of the society

I have elaborated on my battle with Trigeminal neuralgia in my previous posts.

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 into teeth with eye swelling,

Making it tormented house,

 A distressful dwelling--

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...

The pain didn't let me chew food and my lab reports came such that Dr Ishit B Sen nuclear medicine, Director and Head; whom I call "Didi" affectionately said, 

“Try to eat something, your reports look like those of starving Ethiopian children!” 

So maybe now I have to get a dental visit to fix my teeth so that I can eat better because going to the dentist comes as a package deal with trigeminal neuralgia.

The nerves supplying our teeth are the same as those that transmit TN pain. The same nerve that's telling our brain there's piercing, electrical pain in the face is also the one that alerts us to a toothache.

I thought it's a simple tooth- and gum-related problem in the left side because I wasn't aware that I have bilateral trigeminal neuralgia. Tapping on a particular tooth will usually arouse pain in a dental problem. 

Well, my sob story is I returned home and got 105F fever because of my immunocompromisation and then I called doctors, all said I need immediate hospitalisation but Dr K K Handa was clever to realise that by the time I reach my treating hospital I will be serious and the fever needs to be brought down. He advised ice-bath and the fever was within limits so he prescribed few medicines for the night. Next day he saw me and treated me with antibiotics.

Pharmaceutical science has medications to control the pain without any invasive or non-invasive treatment.

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. The intensity of pain was increasing with every passing day.

I want to live up to my dreams and aspirations. I desire to become an established author.

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

 as I told her,  that 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 my 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 which 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.

After I wrote a come-to-the-battle sort of poetry "Warrior Princess" after which the flames began, the quest for knowledge...life became magical even in poverty, while facing medical embarrassments and the humiliation of asking for financial help, physical suffering which is always there money concerns for food, medicines and rent. I had stopped thinking about my diseases and in the uneasy days of life started to Live! Live the wonderful life that is in me! I felt that rare pulse of joy and was transfigured with joy. An ecstasy of happiness dominated me. I had also written for Sahitya Akademi with my painful Trigeminal neuralgia so I decided to play sidekick. 

After which I got letters of appreciation 

Since I am talking about 

 

Let's continue, as I started writing more characters came into my mind --Verma Sharma detective duo is the avatars of Thomson and Thompson, providing comic relief. Inspector Arin of the homicide department and so on. 

"The primary characters of the series and a few situations are drawn from the author's own life enhanced by imagination and the stories carry messages." 

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

 

While I was typing the lines there was swelling in my eyes and the eyes feet on fire with tears streaming down. I felt pain at the back of my head and the ear and even the pinna. I remember taking painkillers after breakfast apart from the medicines I am on, but still, the pain remained. 

The agony of the soul as it shrieks in pain is indescribable at night. My mum used to stay awake with me trying to calm my pain. The pain was gone for a brief while and returned to torment me. 

In such a condition, I wrote two other books. 

And

Paperback editions of all books were published by

Zebra books, registered in my mother's name.

 My heart stopped jumping with joy, enjoying the elixir of life, and as I learned to shed tears of wicked pain hugging my mother at night when the soul screamed out with the agony and howling in pain. I hugged my mother and muttered and cried as pain then came through loud and clear.

I got support and kindness and the cyberknife for the right side-- the most painful side which happened and we returned in time just before the COVID19 lockdown. The nerve was shot with a high dosage of radiation to destroy it.

After returning I got an email from Monika Thakur stating "I appreciate your efforts put in to give to the society an interesting and captivating book 'The 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 "...I was delighted, proud, excited.

Then it was lockdown, and Delhi and Noida border was sealed but classes weren't held. She denied taking the books.

 When I got a chance to write for Times of India Digital I Whatsapp her if she was still interested because I was working on my bio, I got a shock, stronger than trigeminal neuralgia.

"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"

This was there in her email. So how many books she's sold and I'm not getting anything, any money, royalty for my effort. She has stolen the intellectual property of a disabled person. She didn't even buy a copy but borrowed it from her neighbour, photocopied it and is earning from it. 

Someone approached her to say this is not the right thing to be done.

 She addressed me as..."That girl"...I also have sympathy for her… well, you are using 'That girl's' book as your syllabus and earning money. "That girl" doesn't need your sympathy---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. 

It's a trifling thing though but I didn't expect an English language school teacher would say" I have sympathy for the girl". I was surprised to hear that because all my life I tried to make people understand that.

The result of living in such a “polluted” social environment is alienation, a constant state of dissatisfaction and discomfort,  and the development of various coping mechanisms that attempt to make alienated life bearable.

One’s essential life activity becomes simply a means for life, a way of earning money so one can buy the necessities.

I'd like to quote from my book she stole--

 "Money” and “Power” are the root causes in every act of felony, every crime, every treachery committed since time immemorial. Money, gold, holds allure because it gives power, a lavish lifestyle and many are ready to harm a life for its powerful charisma. Money tempts most people to wrongdoing. Crime is as old as humanity. Thus, it is since ancient times that brothers are slaughtering brothers for the power of the throne and the wealth it brings along. Slaughtering, poisoning, strangling, asphyxiating, backstabbing, but achieving money and power and destroying every life in the way. Such is the queer nature of the human race. A son instead of being dutiful towards his parents desires the end of the ailing, helpless parents and shoves them out of the way, a raving egomaniac parent drunk with the influence of wealth, affluence, power withholds what the offspring truly deserves, thus strangling the life out bit by bit.

Yesterday, I noticed the book is being sold on Google books. I wrote to Google and they said they got the manuscript from third-party Bower.com. Now we need to get to the bottom of this howdunit? Nobody should take advantage of the Warrior Princess.

Everyone will read and forget it's unfair and shrewdly omit to hear, see or understand the actual fact or the factual act.