The amazing story of this 38-year-old Indian author who suffers from VHL, a rare disease
Payel Bhattacharya suffers from von Hippel-Lindau or VHL. She tells us about the various difficulties she has faced in her life due to VHL and how she wants to make people aware of this rare condition.Updated: Dec 27, 2018 17:04 IST
Delhi based Payel Bhattacharya suffers from von Hippel-Lindau or VHL, which is characterised by tumors forming in organs of the body, including in the brain, spine, ears, eyes, lungs, liver, pancreas and kidneys. As result of the disease, she has undergone around 14 surgeries and radiation therapies. She also has trigeminal neuralgia, known as the ‘suicide disease,’ a condition which actor Salman Khan also suffers from.
Money is always a problem for her due to the extremely high cost of treatments, especially after her father passed away all of a sudden 10 years ago, which was another big blow to her.
Payel was also diagnosed with a rare form of multiple brain tumour in 2013, when doctors gave her seven years to live (a time period which is almost over). One way in which Payel deals with her condition is by reading and writing- she has authored five books till now, including her autobiography.
Payel tells us about the various difficulties she has faced in her life due to VHL, being asked to vacate her home on her birthday and how she wants to make people aware of this rare condition.
Since when do you have VHL?
I was born with 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 tumor and in certain cases it turns cancerous.
After a lot of misdiagnosis and diagnostic dilemma I was diagnosed with the disease during my liver transplant. My liver was riddled with hemorrhaging tumors which individually couldn’t be removed. Thus, I survived a very expensive (Rs 30 lakh) liver transplant which went on for about 18 hours with a team of thirty doctors. My father died just after my liver transplant.
What sort of difficulties do you face when you lost your father?
He didn’t leave us any money, or a house and we became homeless and penniless. We had no idea how to arrange our food the next day. A liver transplant patient requires immunosuppressant medicines which are lifesaving medicines so that the new transplanted liver is not rejected like bacteria or viruses. These medicines are expensive, and we had no idea how to manage my expensive treatment.
My father was like a tree in whose shade I grew, and he cared for me so much that it always seemed that if anything goes wrong, if we encounter a storm, he will somehow manage the situation and protect me. His loss was such a great shock that I couldn’t cry. I couldn’t believe that he wasn’t with me any longer. I would think without him would I ever exist? But I did because I never lost hope.
Is it difficult to explain your condition to people?
We are judged mostly by how we look. I didn’t look afflicted. Therefore, when I approached people for help they gave absurd suggestions like getting free food from religious places and living in dharmshalas. Perhaps if I had a missing leg or an arm they would have readily helped or perhaps if they saw me in bed writhing in frustration and pain.
Being on immunosuppressants with my immune system suppressed I cannot go to any place or eat anything because I am susceptible to several diseases. I contracted MDR-TB under my immunocompromised condition. I am a survivor of kidney cancer which is a manifestation of VHL. Explaining somebody about VHL takes an immensely long time, sometimes even a month and even then, people don’t understand the nature of the disease completely.
When I ask some people for help, they remain mute, as if I don’t exist but sometimes there are some kind souls who help without asking. But I should add that I don’t despair. Maybe that’s why somebody sometimes helps, and I survive. I can’t even say how many people have come in my life when I desperately needed help and then poof! They vanished! This process continues in my life, but I always hope people would someday really understand me.
You’ve had problems with landlords too?
Yes. Sometimes they drove us out because of my MDR-TB and sometimes it was because they were running at a loss. They didn’t care for my condition, the adverse effects of shifting flats, and the extra money involved. We are living in Delhi for about a decade and have been leading a nomadic life being hounded by landlords to the effect that we had to change houses seven times.
One landlord, when I was puzzled with a tricky brain tumour and my kidney cancer and was running to various doctors presented me with a court notice to vacate the flat immediately. It was on my birthday. I didn’t give in. I survived my kidney cancer and the brain tumour got radiation, but it claimed most of the vision of my right eye. Ultimately the judge gave me just five months’ time to vacate. No time is enough for the body to heal after a major surgery and each time the body behaves differently.
How do you deal with having this condition and the other obstacle you face in life?
I am a bibliophile. I find joy in reading and I am an avid reader. Even though I have a rare form of multiple brain tumour called leptomeningeal hemangioblastomas, which is a manifestation of the VHL syndrome and that a brain tumour has claimed most of my vision of the right eye I like reading and writing.
With my brain tumours I experience a bit of confusion and short-term memory loss, therefore I took it as a challenge to write detective-fiction. I have written the Mum and Princess Series. The first book- Mum And Princess Go Spying is published by Half-Baked Beans in Kindle format. The second is Sweeter Than Revenge, a locked room mystery, published in ‘kindle direct publishing’ or KDP. I completed writing the third in the series which is called Mum and Princess In Mystic Land.
I have also written a fictional account of my life story, The Warrior Dies Dancing, That’s Who I Am, which is published in the Indian Literature journal of Sahitya Akademi in the September- October issue of 2018. In November 2018 I have published my autobiography of the same name with KDP. I want people to read and know about my struggles, create awareness about VHL, the unpleasant experience of having the disease and I also want people to know how I have faced the cruel situations in my life. The Mum and Princess series which I write are drawn from first hand experiences of my life.
Payel Bhattacharya tweets at @Payelbha
The author tweets at @shadowwarior and be reached at firstname.lastname@example.org
First Published: Dec 27, 2018 15:08 IST