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Submitted by Payel Bhattacharya on 24 February 2020

Payel Bhattacharya was born with VHL or von Hippel-Lindau, a rare genetic disorder, and has multiple other issues, which have made her life a constant battle with medicines and surgeries. She recounts here how she spends a typical day at home, with her mom and pain being a constant companion, when she is not admitted to a hospital for treatment.

#DayInTheLifeSeries

About me:

They told me that I was born with little hands and little feet. My father played with my little hands with fondness, proud dreams in his eyes. My mother doted on me, but my parents were unaware of what's in store. I was diagnosed with a serious genetic disorder, the von-Hippel Lindau (VHL).

VHL or von Hippel-Lindau 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 little knots of extra capillaries form a growth or tumour and in certain cases it turns cancerous. VHL can affect up to ten parts of the body, including the brain, spine, ears, eyes, lungs, liver, pancreas and kidneys.

Because VHL varies so widely, there is not a consistent set of symptoms in each person. Every incidence of the disease has its own diagnostic evaluation. There is a wide variation in the date of onset of the disease, the organ system in which the problem occurs, or the severity of the involvement. Every person is different.

When I was attacked by VHL early in childhood, I found myself alone, but I grew up in the shadows of an extraordinary mother who helped wipe out bad memories and see the prettier side of life.

My father’s death was yet another blow for us, asn we were left penniless and homeless. My mother was the rock with whose help I also overcame MDR- TB and its expensive treatment along with two sessions of radiation therapies (in brain for leptomeningeal hemangioblastomas) which went on for six weeks, and not forgetting the kidney cancer.. I’ve had numerous surgeries, not forgetting thyroidectomy which led to HypoPara (hypocalcemia due to low parathyroid hormone level).

We get by with arranging all those expensive immunosuppressant (anti-rejection) medicines for the liver every month and laboratory and radiological tests with the divine power helping us because we don’t despair.

Know more: Someday Somebody Would Really Understand My Condition

Morning

The morning which comes with a flaming sunrise has become the favourite part of my day. I am always high on hope!

I like to spend the major part of the day either reading, watching films or writing, and need help for daily activities, and for that, I depend on my mum. She is sweet and she sustains me. Waking up each morning makes my soul fill with glee. It means another day I can spend with my wonderful mum. After breakfast, I need to wash down a whole lot of pills with water.

Mum talks, I listen, and we are happy and grateful, pleased with each other sans companions, sans allies. We forget our pain, grief, apprehension and agony and mum assures me that good tidings will come.

My movement is restricted because I suffered MDR TB with pulmonary, lymph and bone involvement. My diet consists mainly of food cooked by mum. She is a great cook and can make delicious stuff with less oil and just by baking.

Afternoon

I want to live my dreams and aspirations and mum plays a major role in it. During the day, we discuss plots for our stories together and try to figure out the flaws. At noon, we consider various approaches to write stories if sleep does not overcome me (a side-effect of the medication I take). Sometimes I need a nap desperately.

I have perhaps inherited the penchant for reading from my grandfather who used to be a fountain of knowledge. I read books on various science topics and these days the internet has made the job easier for me. I am well-informed about my own diseases. The will to know never stops and I have read books on trigeminal neuralgia.

Reading books is my hobby, but I don’t admire modern romance or relationship drama. I have had enough relatives who have deserted us when we needed them the most.

I kept looking for hope and I found hope amongst mankind not tied to me by any blood bond. It is their combined effort that pulled me out of death’s grip for every deadly surgery. Thrillers are my favourite where wit and observation can deduce the identity of the culprit or ghost stories and spy thrillers. I am in love with books which display the razor-sharp wit of the author.

I have written three books, The adventures of Mum and Princess (a collection of six detective stories), Midnight (A ghost story-cum spy thriller) and A Warrior Dies Dancing, That’s Who I Am…(my survival story). But all these radiations and brain tumours made me get a short-term memory loss on top of that I am blind with one eye so it takes quite a while to write and go through the script.

Evening and night

I spend my evening time reading books or writing and mum spends her in the kitchen. I only eat mashed food prepared by her and use a straw to drink liquids otherwise pulses of electricity travel through my lower jaw. We don’t practice burning the midnight oil.

At night, when we go to sleep, we are always thankful that we have survived another day. Sometimes this innocent timeline of our life is disrupted when we are anxious about money.

Sometimes money can buy you good treatment, and save your life.

According to the doctors we have recently been to “it is rarely seen that bilateral trigeminal neuralgia with pain in all three branches on both sides.”
I was told that I should come perhaps at the last moment… I had a feeling of history being repeated. When my father was alive he went to most hospitals across India for my growing brain tumour causing partial seizures but I was told these very words “Come at the last moment when the tumour grows to the size of a Deus ball” it was also added that there was a chance of getting paralyzed for life.

I got this hope from Dr. Shankar Vangipram of HCG Khubchandani Cancer Centre Mumbai who said he could definitely treat me by cyberknife radiosurgery, but the reality of my financial situation is such that it will not be able to pay for it.

The pain of TN is the most agonizing pain I have ever felt, akin to when the hemangioblastomas (tumours of VHL) were bursting in my belly in the ICU before my liver transplant and I demanded euthanasia from the attending doctor. Little birds still sing on the trees and there is still warm sunshine waiting for me. I need your support and kindness to boldly fight the cruelty of the pain gnawing into me and destroying my life.

Donations are welcome for Payel to continue her fight:

Payel Bhattacharya

ICICI Bank

Account Number: 103101510715

IFSC code: ICIC0001639
Paytm number: 9654063079

or https://www.impactguru.com/fundraiser/donate-to-payel-bhattacharya