While spending hours in front of a silvered mirror admiring my scars, all I see is a strong, wild, badass Unicorn 🦄.

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. 

When I had two surgeries back to back and the doctor said, "Everything is in God's hands", and I came to unexpectedly with drainage tubes and wires hooked up onto me and were discharged from the hospital with two with drainage bags dangling on both sides I had to just switch off my mind from the physical confinement of pain, facing medical embarrassments, the humiliation of asking for financial help to pay the hospital bill for the sudden surgery because it happened during the time of demonetisation. 

Physical suffering is always there with a rare disease and especially when doctors go wrong. But I was never aware of a pain that lingers long,  very, very long.

I always thought comfort lay in the knowledge although it is hardly worth reading or knowing about if you feel fear softly following you along the darkening streets of life, you got to understand that information, awareness, understanding, depth of thought dispels fear, worry or stress. Sitting in the darkness I started seeking knowledge of the ways of nature. A dark gloomy world, it definitely seemed but I read whatever I could lay my hands on.  I have a serious condition known as "Abibliophobia" but I am not here to explain that.

Strange but true we are afloat in a broad sea 🌊 anchor-less,

Fear sets in when we shed a tear in aloneness,

Ah! What a mess!

" Have no fear!" said Hope,

"When the Sun gets sunny,

We will have a lot of things that are very funny."

So I say never stop believing in hope because miracles can happen any moment! A lot should be shared with others from what I have learned in a simplified way, so here it goes…

The rarity of CNS leptomeningeal hemangioblastomas. 

Brain tumours grow within a rigid, firm bony skull. Benign, slowly growing or malignant brain tumours may produce serious neurological symptoms and signs prior to treatment or cure. Although brain tumours rarely metastasize outside the central nervous system (CNS), disability and death occur with brain tumours when the intracranial contents exceed the intracranial space, causing herniation and compression of respiratory centres.

Fewer than 5% of patients with brain tumours have a predisposing genetic syndrome. The most common of these are von Recklinghausen's types I and II neurofibromatosis, tuberous sclerosis, von Hippel-Lindau disease, and the epidermal nevus syndrome. These dominantly inherited neurocutaneous syndromes are associated with an increased incidence of specific tumours.

There are more than 120 types of tumours of the CNS.

Neuroepithelial tumours are the most common and feared tumours of adult life and occur most frequently as astrocytoma, oligodendroglioma, and ependymoma.

Leptomeningeal hemangioblastomas are perhaps the rarest sort.

What is a hemangioblastoma?

Hemangioblastomas (HBs) of the central nervous system (CNS) are histologically benign, slow-growing tumours, which may occur as sporadic lesions or in association with von Hippel­Lindau (VHL) disease.

What is von Hippel-Lindau or VHL?

von Hippel Lindau is a very rare disease. 

von Hippel-Lindau or VHL which is a genetic defect that causes capillary growth to go out of control. While the tiniest blood vessels or capillaries usually branch out gracefully like trees, in VHL patients a little knot of extra capillaries forms a growth or tumour and in certain cases, it turns cancerous. It is a genetic form of cancer VHL patients battle a series of tumours throughout their life. 

VHL may occur in up to 10 organs of the body like liver, kidney, brain, spinal cord or retina, inner ear, pancreas. There is a possibility of neuroendocrine tumours.

What are the leptomeninges?

Meninges are the three membranous envelopes—pia mater, arachnoid, and dura mater, that surround the brain and spinal cord. Cerebrospinal fluid fills the ventricles of the brain and the space between the pia mater and the arachnoid. The primary function of the meninges and of the cerebrospinal fluid is to protect the central nervous system.

The two innermost layers of tissue, arachnoid mater and pia mater that cover the brain and spinal cord are together called the leptomeninges.

Leptomeningeal dissemination of Hemangioblastomas

Hemangioblastomas of the CNS are solid or cystic vascular-rich tumours, most common in the cerebellum, less frequent in the brainstem or spinal cord and rare in supratentorial locations with meningeal involvement. 

Bakshi et al3 described a 55-year-old patient with disseminated intradural masses involving almost the entire spinal cord on magnetic resonance imaging. They reported both extramedullary intradural tumour with numerous leptomeningeal nodules and microscopic infiltration of the spinal cord and coined the term leptomeningeal hemangioblastomatosis to define this condition. 

Hemangioblastomas of the central nervous system are the most common tumours seen in patients with von Hippel-Lindau (VHL) disease.

Leptomeningeal dissemination of hemangioblastomas (HB) of the central nervous system (CNS) is extremely rare. 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.

Diffuse infiltration of the leptomeninges is known as hemangioblastomatosis and has been observed both in VHL disease and in patients with spontaneous mutations. 

Treatment

Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analysed is small. Patients may have other underlying health issues which may affect the data.

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 tumour 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 tumour cell spillage during surgery.

Prior to surgery of the initial tumour, planned embolization should be undertaken if possible to reduce blood loss. However, depending on the actual tumour structure embolization may be found not to be possible. Reducing blood loss may also help in reducing tumour cell spillage and spread.

 Looking at tumour cells in the spinal 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. 

My experience with leptomeningeal hemangioblastomas for 7 years? 

I was diagnosed with supranational leptomeningeal hemangioblastomas in 2013. I have been seeking anyone experiencing the same condition but didn't find anyone till now.

A fellow remarked after he saw the picture of the scan of my brain tumours

" you have more tumours 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 tumour 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 tumours start putting pressure on the brain and become symptomatic. I have lost vision of my right eye for not being able to avail radiation therapy at the right time because of financial reasons and also because  I was diagnosed with an RCC ( kidney cancer) at the same time. 

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

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

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

Unexplored safe technology.

It is a new exciting technology which may help people trying to minimise collateral damage which with radiation treatments has always been the challenge. 

The precision of proton therapy can be critical for protecting the brain’s delicate tissues.

Proton therapy can limit the amount of normal brain tissue receiving radiation. That reduces the effects on important functions, such as vision and hearing.

Proton radiation may be less likely to damage nearby organs, such as the heart and lungs while treating areas around the spinal cord. This technique is safe and potentially effective.

Often, people with these recurrent tumours have received significant radiation doses in the past to important parts of the brain. These may include optic nerves, which are critical to vision, and the brainstem, which regulates many essential body functions, such as breathing, heart rate, and swallowing. 

To treat more people with proton therapy is by making the technology even more accessible. Currently, this technology is available only in Apollo Chennai and expensive enough to cost an arm and leg.

If only, governments or some trust or Institute sponsors the high cost of my treatment. I could have a better and longer life and my quality of life would be better. 

References

• Hemangioblastomas with leptomeningeal dissemination: case series and review of the literature in journal Acta Neurochirurgica.

• Supratentorial leptomeningeal hemangioblastoma resection after preoperative embolization Lee, Ching-Yi, Chen, Shiu-JauLanguage: English Journal: Formosan Journal of Surgery.

• Journal of Korean Medical Science, article Arch Pathol Lab Med--Vol 132, January 2008- Intradural Extramedullary Leptomeningeal Hemangioblastomatosis and Paraneoplastic Limbic Encephalitis Diagnosed at Autopsy

• Journal Neuropathology -A report of supratentorial leptomeningeal hemangioblastoma and a literature review 

• Power and Precision: Proton Therapy Can Target Brain and Spine Tumors with Fewer Side Effects

I might add a finishing touch,

" When you hear good eats think of horses not zebras" … 

This is told to medical students throughout their training. 

In medicine, the term "zebra" is used in reference to a rare disease or condition. Physicians are taught to assume that the simplest explanation is usually the best so as not to go around diagnosing patients with all sorts of unfamiliar illnesses that are highly unlikely. Common diseases are what doctors should expect to encounter.

Many medics seem to forget" zebras 🦓" exist and so getting diagnosis and treatment is difficult for those who have a rare disease.

While spending hours in front of the silvered mirror admiring the scars of a liver transplant, partial nephrectomy, incisional hernia repair which led to the unfortunate debridement, when I asked the brightest medical mind

 " Am I going to die?"

His rejoinder was

"We cannot let that happen, you are our precious patient." but the surgeon who was supposed to do the debridement said

" Everything is in God's hands"... I nodded and the very next morning they made arrangements for my admission and surgery. While I was hooked onto machines, punctured with needles and tubes going through them inside the operation theatre I was made to sit up and sign some sort of register. When the surgery was a success I showed an upturned thumb to the doctor because God helped him see the right path.

 So, all I see while looking at myself in the mirror, what I find is a strong, wild, badass Unicorn 🦄. 

Mermaids and unicorns are among the world's best-known mythical creatures but bats🦇 aren't. So, why such a delay in tracing the origin of the virus which spread and triggered a global pandemic creating a historical health crisis and a deeply distressing and disturbing experience for many? 

Blowing in the wind

There was once a little girl and nobody felt any compassion for her. She grew up amidst a lot of bawling and screaming and  she sat alone and silent without any playfellow thinking,

 

" If only I had someone who would kiss me and understand my pain."

But her heart was like a sponge, sucking up feelings and emotions, even pain. She was born with the soul of a mermaid who could only suffer pain. Since mermaids have no tears she suffered more acutely.

Nobody paid any attention to her, nobody watched and cared for her. At a tender age, her delicate little feet felt like knives were being driven through them.

Nobody was concerned or cared about the trifling little spirit being engrossed in the glory of their own story setting a sharp pang which pierced her heart. She found herself sorrowful and alone but she couldn't mourn or weep or express her suffering although her heart shrieked and howled, she never uttered a word.

She was never very sociable and children used to make fun of her and refused to play. At school or home, she had nobody to talk to. Oh! how she desired to be sitting with other children prattling away merrily, joking and talking nonsense. 

Nobody read her charming stories and she slept heavily only to wake up in the morning after having hideous nightmares.

It is certainly a good fortune to belong to a well-to-do family but when you are the only girl child of the generation belonging to an orthodox family, it doesn't necessarily mean that they would be delighted in you and faithful to you. Parents were exactly the opposite of the family members and took care of the girl until the next child was born. They fussed over their second child because he was visibly ill with incidents of abnormal electrical activity in his brain.

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

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

The time came when abandonment, desertion was in full swing and brought anxiety with it. Hah! Pain? Nobody cared if she lived or died because it will bring them to gain. 

Mother guarded her children and stood on the lookout for any storm as the conspiration went on a molecular level. 

In the dismal netherworld The Restrainer, Yama sat on his throne with his noose and Danda-the rod turning his moustache proudly and asking his accountant Chitragupta who is to be judged next. Chitragupta came ahead with his massive register and announced the girl's name. The two great hounds with four fiery eyes started drooling.

Mother guarded her little nestling by wrapping her wings around her while her father flew away. Standing on one leg, day-to-day she stood like a grand sentinel. She continued her task spiritedly and even in her sleep, she continued to pray earnestly to the power from which the entire universe has emerged.

She lifted her tearful eyes towards heaven and prayed,

" O' Mother of the entire universe, do thou help me! I must venture, although I have been duped, swindled, deceived, betrayed and everybody has left me, I shalt not be denied help from heaven, it's my duty to protect my children from the torrents of rain. I can not abandon them."

Heaven smiled at her courage and perseverance.

She trained her other child to face every hurdle beautifully and become self- sufficient and he developed his own morals and values and didn't wander off into the wide world while flying high.

Help preserve my daughter! She begged the apothecary.

While facing a horribly wicked malicious fate she never screamed with terror or annoyance. Her daughter faced the knife with a sweet smile and sparkling eyes, never looking like the picture of grief. 

Yama was standing beside the procedure bed ready to toss his noose to get the soul of the girl. He is famous due to his responsibility for good decision-making based on records of a person’s deeds. But looking at the bold and daring guiltless face he got flabbergasted and called his scribe Chitragupta, who fetched his logbook to check if the name was really there or not. Yama is also known as Dharmaraja, King of Justice, he is the punisher of the wicked but couldn't find any wickedness, vice, immorality in the girl's deeds or her parents. Scratching his chin he returned to his palace in the netherworld.

Then again in the midst of hunger, worry, for medicine and struggle, staying in a strange house, the girl was ambushed by a pathogen, a bug who came blowing in the wind and made the host suffer with every breath.

While tending her daughter, Mother lifted her eyes filled with vitality towards the Heaven  and asked,

' O' the God of Wind, you are vital to life, you are Prana. Why the suffering? Why the distress?Why the pain?" 

He whistled away making the windows rattle while a phenomenal "Aum" resounded from the centre of the universe.

A disembodied voice rang in her years,

"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 she's suffering is the karma of her past lives, it depends on her reaction towards her sufferings, how she is going to cope, get along, manage."

As she made it through one ailment, another became ready to charge ahead. Once again in an extremely confusing situation, Chitragupta, the bookkeeper of the God of death, Yama made her sign the logbook when she was hooked onto machines, punctured with needles and tubes were going through them inside the operation theatre and Yama was standing behind nodding his head. She sat up, mustered up all her strength, saw her mother's face in front of her eyes and signed. Then when she laid down she showed an upturned thumb to them for luck. Yama covered his face, the Oh, no! It was a sure catch but he missed this time too! The way she was sneaking out he wouldn't ever capture her it seemed.

Then again a fierce situation came and her heart stopped jumping with joy, enjoying the elixir of life and she learnt to shed tears of wicked pain hugging her mother at night when she felt her soul screaming out with the agony and howling in pain. She hugged her mother and muttered and cried as the ruler of the clouds and skies, the God of Thunder and Storms wielded his weapon, lightning and thunderbolt and sent electricity through her brain. She had a jabbing pain as if a live electric cable was held against her eyes, cheeks, jaw and teeth.

Her first feeling was of anger but as the pain ebbed and flowed she felt ashamed because anger, bitterness, outrage is sin and she didn't want more bad karmas in her life. God has given her lifelines because of her deeds but she didn't want her lifelines to be taken. She found the sun shining gloriously, singing birds and celebrations with mum so delightful. She understood how her mum had been exploited and overburdened by her in-laws, how she had taken care of her 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. Now she realised her pain is indescribable, unspeakable, disgusting but so is mum's life-long struggle.

As she read the headlines "Girl raped twice by father during lockdown while mother stuffs cloth in her mouth". She was filled with revulsion, nausea and felt sick in the stomach. This is Kaliyuga, how people have changed. Every day she prays for the same mother in next life, if it really exists. Perhaps in the next life, she'll be able to really care for her, as of now she is dependent on her in many ways but still, she resolved to put in her best efforts. The widespread disease has brought out the worst aspect of human character! Thinking this she switched on the radio and listening to the song went towards the window.

As Bob Dylan was singing 

"How many times can a man lookup

Before he sees the sky?

How many ears must one person have

Before he can hear people cry?

And how many deaths will it take 'til he knows

That too many people have died?

The answer, my friends, is blowing in the wind

The answer is blowing in the wind

Oh, the answer, my friends, is blowing in the wind

The answer is blowing in the wind"

She looked heavenwards and saw the God of Wind mounted on a deer held his hand up as if he was blessing and the next moment Lord Hanuman flew past carrying a mountain on his palm and looked at her winked, and dissolved into the clouds.

Ignorance is always abysmal, learning... thinking before believing what you are told is realistic

There are myriad challenges of having a malady. If you have the most unusual diseases known to humankind it becomes a fateful condition where you can't afford to be ignorant and continue being tired if you desire quality and extension of your life.

There will be an intense, somber, indefatigable strife 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 desirable treatment regime.

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?

Oftentimes, I don't get dragged into the melancholia of the medical lore when I seek medical advice because if you stick with just one opinion it might result in hazardous effects or sorrowful tragedies.

When you are a medical curiosity, medical personnel make exaggerated claims of their achievements and try to draw you into an unnecessary surgery which has a drastic and dramatic effect when a non-invasive procedure is preferred to preserve your life. They forget the medical profession is all about the preservation of life. They wish to put you in cold storage because they might as well think if you go kaput you'd be useful when you are dead rather than alive because they want to make major advances by making unusual exploration and conquering certain strange and unusual diseases and reach unpredictable heights of fame.

So better not stare at them with stupefaction, even the most brilliant medical mind can make mistakes and it happened with me twice… when unwary, heedless surgeons worked for hours to save a patient's life, noted a minute detail but failed to test it for any further implications... next time it was when their negligence led to the other doctor saying "Everything is in God's hands" because they are not omniscient or omnipotent, they use their acquired knowledge and skills to save a life.

Surgeons must be very careful

When they take the knife!

Underneath their fine incisions

Stirs the Culprit —Life!- Emily Dickinson

What did you say? 

"Aha—you observant rascal. You are bonkers...are you crazy?"

 No, I am not. 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. 

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".

 Let those walk away who don't want to stay because your 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. The right ones will not leave, in my case, only my mum stayed with me, everyone else turned their face. I don't expect anyone to understand my journey because they have never walked the same path, trudged the same hills. 

Humans have a natural desire to have more good things than he requires, but don't understand what others need...perils they face...ordeals they are going through...are they humane? Do they scoff? Do they abide by the small rule formed by society…" helping hands are better than praying lips…" If we have promised ought, let us keep our promise" but promises which are hollow, empty is worse than lies … the greatest sin as you make others believe and hope for something which you are sure you can't do…"Tis not what man does exalts him but what man would do"-- Robert Browning. 

This is not sentimental madness, 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 existing 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 and my battle with the selfish self-centered 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. 

But it's the truth even if it didn't happen

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. 

Supercalifragilisticexpialidocious! 

Life is so beautiful and precious!

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.

The name of my disease sounds euphoric and when you start explaining it resembles deadly babble where the prognosis is like a psychic scream. 

It's like Jerome. K Jerome said "I sat and pondered. I thought what an interesting case I must be from a medical point of view, what an acquisition I should be to a class! Students would have no need to “walk the hospitals,  " If they had me. I was a hospital in myself. All they need do would be to walk round me, and, after that, take their diploma. " in his novel "Three men in a boat."

After battling countless surgeries, I can understand the value of human life and can feel the consequences of the moments that people lose whining 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 and don’t lose it. Treasure every moment as if they were your last.

I love Ken Kessy's words " But it's the truth even if it didn't happen". However, I have a lack of a vital emotion, fear which made me survive several life-threatening surgeries with a smile on my face when Doctors said: " Everything is in God's hands".

Multi-drug resistant tuberculosis made my life unbearably agonizing for me but I never shed tears or complained about the pain and discomfort because that's the way I am. 

"All my life I had to battle and struggle against things"

She remembered with horrified revulsion

With congested brain but plenty of imagination

She fought the demon with Mum’s inspiration

Faced the momentous occasion

Putting her faith on Divine Providence

God's intervention

Even in unthinkable pain

She does not complain

She needs more encouragement and support to win all wars with determination, my mum had thought in her weakest moment, 

Her cogs and circuits malfunctioned

She fought the war unlamented

She faces life uncomplaining, contented

A very long time ago, a lifetime before the present

A dragon came to blaze up her life, push her to perdition

She traversed Via Dolorosa holding tight

Inspired by glorious Mum's might

She is a warrior, yet something human and living too. 

That deserves its happiness like me or you.

I don't know how to cry but when Trigeminal Neuralgia attacked me

Irrepressible pain

Gloom hysteria

I am Trigeminal Neuralgia

Daggers stab eyes 

Shedding tear

Sending a wave of fear ☠️

He taught me to cry but then with mum's support I controlled myself. Mum's affection and care act as restorative always.

Battle with Trigeminal Neuralgia

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. 🌤

Life for me is a challenge to be met with courage. Life is a game of skill with an element of chance. Life comes to a standstill if you give up hope. The power of volition originating from the energy of creation residing inside us made us move onward in small steps and little by little without thinking about the future or what may come tomorrow we advanced without stopping, without crying, thus like every life from desiring to live making tough decisions I fought on. 

I am not a  woman who views the world with disappointed eyes, who subconsciously feels she has missed something which means in the point of fact she has missed everything. I love life and want to live at full throttle and jumped ahead with zeal. Not being a quitter I do a lot of things with gusto.

I still dare to change the things I can,

I resuscitate ceaselessly,

I wage wars with verve

In a point of no return

Yes, a Warrior Princess I am. 🌬

Like Asterix and Obelix travelling the untrodden track, I jest with Mum about the crazy Romans we met in our lives.

I make my own roads, 

Every stone on the way has a significance, 

If I trip I gain more experience, 

My remembrance

Helps me to use my diligence, 

To make my road better. 

To tackle my sorrow, 

So that my eyes don't get wetter, 

Thus building a brighter tomorrow. 

Without a hurt, without a tear, 

Without pain, without fear, 

Without despair, 

Where everyone will care for each other, 

Angst and pain will disappear. 

Everyone will love one another. 

A Warrior fights the battle of life ---all its dreadful possibilities without a whit of fear without thinking that it’s unfair. Before we are inevitably visited by death and thrust to total chaos a warrior’s mind gracefully dances to the rhythm of the music of creation and life. Thus, A Warrior Dies Dancing, That’s Who I Am… The upshot is life belongs to us but we belong to death meanwhile dance away the time you get.

Life should be lived in every moment, smiling on the face of adversity because we don't know when the moment of death would come. Life has to be wonderful and startling so that you are remembered for your hopefulness, not for your funk.

 I have my very own ishta devata(favourite God) to whom I pray from inside my room every day and he provides the strength to fight. I have fought through many wars but I have never abandoned science. I have always treasured every moment as if this was my last and fought on. 

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.

The happiness of our heart is the thing to be considered before anything else and I am sure it would turn out wonderfully in the end.