A meaningful life

A meaningful life

 Simple in pattern, unique, practical, desirable and informed

Entangled in poetic licence I feel logically steadily alarmed

Expressive life  draws upon, and practices, a range of our higher capacities; 

Those bound up with warmth, camaraderie, kindness

Self-understanding, sympathy, intelligence and creativity.

Look everywhere and see positivity

The meaning of life is to glare at the challenges 

Which you meet face to face with  in your loneliness.

Unwittingly, loneliness gives us the most meaningful insights

Spirited hopes are always a delight 

An immense percentage of snobs, I believe, is to be found in every rank of this mortal life.

Only in certain circumstances and relations of life.

Vulnerabilities and will power to survive. 

It is reasonable to have tantrums, moods

With every change in moods

There is no bad attitude 

 To sing badly or cry.

Like Cacofonix the bard

With tune so marr'd

All will be tolerated if there is some

 Less than charm or simply wickedness for a period of time.

Life from a comically

 Complex impossibility 

Something we can all comprehend,

Aim for and 

Sometimes succeed at.

Fill a life with hope extend help and cooperation

 

I have a rare disease called VHL or Von-Hippel Lindau--this is a cancer-suppressing gene and those people who have VHL disease have a mutation, turning you into a tumor-producing factory.

In my case, blood-filled tumors form in up to 10 organs of the body.

The only treatment is the removal of tumors, irradiation, and monitoring but unfortunately, multiple tumors formed in the liver which splayed, compressed, and displaced vital vessels and I had a liver transplant leading to turning off of the immune system.

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

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, or end up with Covid.

I was diagnosed with leptomeningeal hemangioblastomas after the cyber knife in 2013.

Between 1902 and 2013, approximately 132 cases have been recorded.

Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analysed is small. The most common cause of death is respiratory failure due to pontomedullary or cervical cord compression.

I have no income. I write for Times of India digital without honorarium and my mother who is a pensioner draws barely enough pension to feed and clothe us, leave alone pay for my medical expenses. Friends who think I am worthy of life more than expected  and write more donate for my medicine and the rest of my survival needs

Currently I am suffering from a serious multiple brain tumor perhaps I am the first one in India. The small tumors floating around in the fluid used for cushioning the brain and spine tend to compress all the nerves that come their way. Hence the first nerve to be compressed was the optic hypothalamic nerve which made me blind with my right eye even after killing radiation therapy.

I got a swallowing problem. The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII). 

After 2017 I also have a chronic ischemic brain. Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.

The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumour but also the healthy tissue that the beam encounters on its way towards the tumour and beyond the tumour. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.

A proton beam directed at a tumour travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumour.

The mutation of the gene is confirmed in AIIMS research.

 

There were multiple cysts in the pancreas already. They blocked the exocrine functions ( enzymes) and for a couple of months I had to run to the bathroom after every meal. After Creon SD microgranules were prescribed my diarrhea feels better but you can confirm it is around Rs 3000 and lasts for only 2days.

These tumors are extremely vascular. A biopsy would make them bleed resulting in tumor cells spillage, resulting in more tumours and meningitis.

VHL is a tumor suppressor protein that is localized in the nucleus or cytoplasm, the extent to which being dependent on cell density.

The hypoxia-inducible transcription factors have also been shown to play a crucial role in tumour promotion in other cancers including breast, brain, colon, gastric, lung, skin, ovarian, prostate, renal, pancreatic. Increased levels of growth factors result in angiogenesis.

The will to live is an unstoppable thing. Most people live only when they are about to die. 

After 15 surgeries including kidney cancer apart from the above-mentioned Liver transplant I want to survive my life threatening condition.

I, who swam the seas with vigor, without any complaint, felt the warmth of sunshine in the emptiness of my life, from the quest for knowledge I got to know more about my diseases.

My request is to help me according to your preferences and ability.

Life has many pretty song

Physically weaker with mind strong

 My eager combat and real fight

For what's wrong from what's right

Thoughts swirl in my mind

I seek till I find

As thoughts entwined 

I write what conquer my mind

Till my eyes go blind

The more I express my unquenchable thirst for life

In my troubles and strife

Under a surgeon's knife

Countless times

Chasing me throughout my life

But the helpful plunging knife

Longer my life 

Did you ever see such a thing in your life?

To overcome the tragedies,

To survive the hardest times.

To face those moments filled with pain,

And to manage I need the kind 

With the protectors' mind

Life is like an echo

Shout out

Send the sound

Comes with back

Reverberate, resound

What you sow

You reap

You give even when you know that person can't give back 

You get from Divinity

Selfish is senseless

 

I mean, say that you figure that

Everything is senseless, 

Then it can't be quite senseless 

Because you are aware that it's senseless 

 Your awareness of senselessness 

Almost makes sense. 

Isn't everything absurd 

Life's been a jolly good joke on me,

And now is the time to laugh.

For a day and a half

I am a zebra, not a giraffe

'The fool doth think he is wise, but the wise man knows himself to be a fool."

Said the great playwright, poet

Actor known far and wide

Isn't everything absurd?

In truth everything is absurd

I am a poor little bird who wishes to fly

But know life can be summed up in one word.

Life is not triumph but struggle, 

They try to make a double

Senseless, disorienting, and often menacing complexity

Fools tryin' to pull apart the life's puzzle of immortality

Essential to have fought well. 

Trying to learn from what's behind

 Never knowing what's in store

 Makes each day a constant battle to stay between the shores.

Badly broken world, full of wars and cruelty

 Is a senseless tragedy. 

Every human being who inhabits it is served his or her Portion of unhappiness and wakeful nights

Born to see strange sights

I find no peace, and all my war is undone

With sensitive instincts, being a creative one

Using language developed in all sorts of way

 With stunning precision 

To give verbal or written l expression 

And coherence, linking each word naturally with succeeding one

Feeding on sorrow and laugh in all my pain;

Likewise, displeaseth me both life and death,

And my delight is the cause of this strife.

Hope gives me wings I fly above the wind, yet can I not arise;

Society is blindly programmed to preserve the selfish molecules 

Geniuses are but silly fools

Generosity and altruism, because all are born selfish hurtful

Everything must come full circle

It is hard to believe that this simple truth is not understood by those leaders who forbid

 their followers to be self-centered

Are themselves happy cynosure

Climbing over

Putting their needs

Above the real needy

In their dictionary doesn't exist 'give'

Vultures feed

Not calling themselves greedy

Yet not helping the needy

Individuals are not stable things, they are fleeting

In the beginning, was simplicity.

In the middle crept in complexity

But genes are denizens of geological time: 

The stairway of evolution has been a long hard climb

Latest gossip of all the time,

Genes are forever. Start a new kind of evolution.

The rabbit runs faster than the fox, 

Because the rabbit is running for his life 

While the fox is only running for his dinner.

Words are only tools for expression

I feed me in hope and laugh in all my pain;

Leaping from brain to brain

An evolutionary selfishness

Universal love and welfare are senseless

Vague sense 

natural selection of stable forms and a rejection of unstable

Altruistic system is open to abuse

 By selfish individuals, ready to exploit it.

Because they're the chosen ones

To me, it seems life is but a dream within a dream.

 

Speechless, my friend,

Just remember that death is not the end

The truth is that any breath of any day could be our last

Where courage is a thing of the past,

Open up to the probabilities with a deeper awareness 

Of momentary Life

In  the ravine of humble life,

Worked up to it through toil and strife.

If every day we acknowledge the fact that we will die,

It might be today, perhaps we will learn to truly live.

By seizing every opportunity, every day,

 Living life to the full with passion, tenacity, 

Courage and sense of adventure

Find a new pleasure

Feel strong will 

Like hard malleable steel 

See the frame around his sight

In the fairy tale journey

If every day we acknowledge the fact that we will die, 

It might be today, perhaps we will learn to truly live.

Whilst we cannot cheat death, 

In some way, we can live

 So that we can laugh in its face.

What we plant in life's furrow 

The  seed of today is the flower and fruit of the morrow

We reap what we sow

While performing action,

Living on the sphere of attraction,

  Concentrating.on how well we can perform

With reverence and great respect very much the norm

 Without being concerned about its result. 

Fighting without thinking about the result

We should do our best and leave the rest to the supreme

All actions should be performed with an independent spirit And with firm faith in the Supreme power

Who is the dispenser

 Of fruits and justice of all actions

. We should accept the consequences 

without any grudge and complaint.

While Universe will test every nerve,

You get what you deserve,

Whatever you put your time, talent and energy 

you get back. 

You reap what you sow means you must eventually face the consequences of your actions.

Human beings with own ego or the clamouring around him In that noise of hustle and bustle

Jostling and pushing through the tunnel 

He pays no attention to the ever present voice of Eternity. 

He  can hear that voice only when he attains inner confidence 

 His ever changing mind rest in complete peace and inner harmony.

I Ain't goin' nowhere so fast

Gotta live with Mummy 

Summary of litigation

 

OPEN LETTER FOR AID ON BEHALF OF MS. PAYEL BHATTACHARYA

My Client, Ms. Payel Bhattacharya (hereinafter referred to as “Payel”) is a diagnosed case of Von Hippel-Lindau Syndrome (“VHL”), an extremely rare genetic disease, which has only about 70 cases are reported by AIIMS. VHL-related tumors include hemangioblastomas, which are blood vessel tumors of the brain, spinal cord, and retina. The retinal tumors are also called retinal angiomas, which can lead to blindness if not treated in a timely manner. People with VHL also have an increased risk of developing  renal cell carcinoma (RCC), which is a specific type of kidney cancer, as well as a type of tumor in the pancreas known as pancreatic neuroendocrine tumor (pNET). Tumors of the adrenal gland or pheochromocytoma can also develop, with a small number becoming metastatic, meaning they spread to other parts of the body. 

Other features of VHL include: kidney cysts, which are closed sacs usually filled with fluid; pancreatic cysts, epididymal cystadenomas, which are tumors near a man’s testicles; broad ligament cystadenomas, which occur near the fallopian tubes in women; and endolymphatic sac tumors (ELST), which are tumors of the inner ear that may cause hearing loss.

The only treatment is the removal of tumors, irradiation, and monitoring. All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.

Because of the potential morbidity associated with resection of multiple craniospinal haemangioblastomas in von Hippel-Lindau disease, stereotactic radiation therapy has been used instead. Small haemangioblastomas (<3 cm diameter), and those not associated with cysts might respond safely to radiation therapy.

Payel has also developed multiple tumours in her brain as a result of her VHL. The Tumours in the Payel’s brain are known as leptomeningeal hemangioblastomas, and are one of the rarest forms of Tumours known to medicine. Further being unable to obtain fruitful employment owing to her medical conditions, Payel has no regular source of income,  and has been forced to rely on donations from various good Samaritans, to help pay for her treatment. Some of the well-known persons who have helped finance the Petitioners’ treatment include Ms. Sushmita Sen (Actress), Mr. Basudeb Acharya (M.P.), Ms. Abani Roy (M.P.), Ms. Atishi Marlena (M.L.A.). Payel’s medical condition is very well documented and has also received some coverage in the media which has played a pivotal role in her effort to raise funds. Many leading newspapers and magazines have covered her story. A brief collection of such media articles and reports is provided for your reference at the below link:

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In the past Payel has also been able to raise fund by using various crowd funding platforms, and notably such fundraising had enabled her to obtain expensive kidney surgery in the year 2015. While Payel has been able to obtain more than 7 critical surgeries in the past for treatment/control of her disease, including but not restricted to liver transplant surgery, kidney surgery, and multiple brain radio surgeries after a craniotomy in 2006 causing cell spillage thereby leading to the highly vascular leptomeningeal tumors , she now requires proton therapy treatment to help control the Leptomeningeal Hemangioblastomas in her brain.

The said brain disease has also resulted in a condition known as Trigeminal Neuralgia, arising partially from the fact that the tumours in her brain are pressing against various vital nerves critical neuraxis. The pain from Trigeminal Neuralgia is known in medical circles to be most excruciating, which has also given the condition, the medical nickname of “suicide disease”. Upon seeking treatment for such pain, Payel has been asked to undergo cyberknife treatment at HCG Khubchandani Cancer Center at Colaba Mumbai. However the cost estimated for current proton beam therapy at Apollo Chennai staggering sum of nearly Rs. 40 Lakh.

A brief collection of the various medical prescriptions, discharge reports for the major surgeries including the prescription for proton therapy treatment is provided at the below link:

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As of today i.e. June 24, 2021 Payel has been able to raise a sum of about Rs. 1.30 Lakh, from her crowd funding initiatives. Given the dismal response received to her crowd funding initiatives, Payel has approached me, seeking legal aid. In furtherance of the aforesaid we have filed a writ petition before the HC at Delhi, being W.P. C. 3662 of 2021, seeking financial assistance from the State for Payel’s medical treatment under the (Draft) Nation Policy for Treatment of Rare Diseases. Our Petition was thereafter tagged with multiple petitions before Delhi where various parties had sought financial assistance from the State for treatment of rare diseases. Pursuant to such petitions, the Hon’ble High Court had directed that the state notify the National Policy for Treatment of Rare Diseases, which was eventually notified on April 1, 2021. 

We have thereafter submitted an application under the policy with the responsive authority being AIIMS, seeking disbursement of funds under the Policy. However it is important to note that even if AIIMS finds favorably, in support of Payel’s treatment, the amount allocated would in no circumstance exceed Rs. 20, lakh.

In these circumstances unless the remaining sum of Rs. 20 Lakh is arranged for her treatment we apprehend that State/AIIMS may not be forthcoming with the allocation of the initial sum of Rs. 20 Lakh for Payel’s Treatment.

Accordingly we have started approaching various Non-Governmental Organisations, as also prominent persons in the field of media and journalism, seeking any form of aid as can be provided to Payel so as to help support her treatment.

The immediate need is that funds be collected in her crowd funding initiatives as provided at the below links:

_______________________________

So as to ensure that a sum of at least Rs. 20 Lakh may be available in support of her treatment. Any help or support in this direction, no matter how small, is very important to us. In case of any further queries please also feel free to contact me personally at my Cellular No.: + 91 84110  66553, or email advocateghoshkolkata@gmail.com. 

For further reference a Copy of the Writ Petition filed before the High Court as also the past orders passed in said petition are available at the below link:

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Memento Mori

 In the face of death 

Alive with fiery breath,

We live all the more spectacularly 

 In an attempt to escape the inevitable

survive miraculously

Sometimes to embrace it without fear.

In lonesome fear, never sure why you're here

The nature and process of death

Deities associated with death,

 Either because they are death or because they look after death

One of the central concerns 

most religious traditions,

 philosophical schools, 

 mythological tales.

Memento Mori -Remember, you shall die, 

To be born is to die

To say goodbye

Hence Carpe Diem -Seize the day, 

That, granting life today,

Be bonny and blithe, and good and gay.

 Heaven or from hell?

And do we know

We are but dust and shadow

Celebrating the life of the departed we also acknowledge our own mortality.

The sufferings of mortality,

Seen in their sad reality,

The awareness and engagement with the process of death

Feel Alive with fiery breath,

The sky around  and the earth below.

The hour of death is unknown

We enter into life under pain of death; 

Take a deep breath 

Death is vital to life.

Memento mori

 On your desk, or the skin of your hands as you hold a book, 

We always feel at or behind our shoulder

So is there a moral in this story?

This may not stop us fearing death, or grieving;

Such deep sighs should not be heaving

 These are natural human processes

Vague, dark distress

But it does help us see death as part of a larger story

Memento mori 

And it's glory

The universe that, despite its apparent phenomenal hurtling Towards entropy

 Like an unstoppable juggernaut, 

No matter what 

Also rises up into consciousness.

 It tells us that at every moment this awakening happens,

As matter switches on awareness.

 It tells us that we should live both as though

 We were going on forever and, at the same time, as though 

any moment now we are going to…

Our entry. the world bringing our end

 And, just as we are made of ‘stardust’ 

Every man and every woman is a "star”

The unknown and impossibly large number of minuscule parts

And nothing is ever truly created or destroyed

In my life's twilight

The strange ‘Interzone’

 Where I suddenly know that I am already wiped out of existence and forgotten. 

Yet, somehow, I get back

My awareness is like a loop, a binder, 

Pulled across an abyss, 

Immersed into its final destiny

 I am reborn into Time.

It is a Miracle to find Mum

It is being raised from the dead and returning to the land of the living.