I was diagnosed with a 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 with a possibility of neuroendocrine tumours.
It’s not just one but three rare diseases I am dealing with at the same time. With VHL, tumours keep mushrooming inside the body in up to ten parts which include the brain, spine, kidneys, liver, eyes, ears, pancreas.
I have a very rare form of multiple brain tumours called leptomeningeal hemangioblastomas(which is very very rare and only 132 cases have been reported between 1902-2013). It is a manifestation of VHL, and I also have
bilateral trigeminal neuralgia, which is also known as the ‘suicide disease.’
I underwent a liver transplant, which was 18 hours long surgery with a team of 30 doctors.
It was a very expensive surgery, and we had no money, so we reached out to the world, and my liver transplant happened sort of automagically, and I finally survived through it.
Even before this liver transplant, I had a few surgeries, but doctors were in a dilemma about the diagnosis. It was during my brain tumour surgery that the neurosurgeon first suggested VHL, but back then, according to him, VHL was rare; hardly any case was found in India, and my parents didn’t have any symptoms. So, he found it difficult to reach a conclusive diagnosis. Liver transplant helped the diagnosis because it was then that doctors put their heads together to reach a final diagnosis.
The never-ending struggle story:
But the struggles didn’t end there. My father died just after a few months of my transplant. He was a tree in whose shade I grew. His loss was such a great shock that I couldn’t cry because I couldn’t even believe that he wasn’t with me.
It was then that our real tough times began. He left us penniless and without a roof above our head. At the same time, the transplanted liver needs the immune system to be suppressed so that it isn’t rejected like bacteria and viruses. After the liver transplant, you need to be on immuno-suppressants, which are expensive life-saving medicines. It’s not just immuno-suppressants, but every treatment I was going through was very expensive, but my mother and I didn’t cry, we reached out to the world and help came from unexpected quarters, and I did survive.
We still need help as VHL spreads in more parts of my body and brings with it many other issues. I need lots of medication to survive, and it sometimes becomes too hard to manage the fund, but we never lose hope, it’s hoped that always keeps us going.
I’m an MDR-TB survivor (which I got under immune-compromised conditions), and also a kidney cancer survivor, which is but another manifestation of VHL. My brain tumour got radiation, but I can’t see from my right eye because the brain tumour in my optical nerve has claimed my vision.
It’s hard to find help:
We live in a society where we are judged mostly by how we look, and I didn’t look afflicted. When I look up to people to help me, they give me absurd suggestions like getting free food from a religious place and living in dharmshalas. But no one knows about the invisible pain I go through every day. I think if I had a missing leg or an arm, people would have readily helped me.
When I ask people for help, many people remain mute like I don’t even exist, but sometimes there are kind souls too who help without even asking. I can’t even say how many people had come in my life when I desperately needed help, and maybe that’s why I am able to survive.
This process continues in my life, but I always hope people would someday really understand me.
Being a bibliophile helps me:
I am a bibliophile, and I find joy in reading, I am an avid reader. Though I have a rare form of multiple brain tumour called leptomeningeal hemangioblastomas, and that brain tumour has claimed most of my vision of the right eye, I still like reading and writing.
I can’t explain the pain I have while writing with my one-eyed vision. With swelling in my eyes, which feels like on fire with tears streaming down, but my passion for writing made me write 3 books.
The first book- The Adventures of Mum And Princess, is published is a collection of detective stories.
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 published my autobiography of the same name.
I also wrote a paranormal novel Midnight. I want people to read and know about my struggles, how I have faced the cruel situations in my life, and create awareness about VHL.
I am a warrior princess:
When I tell people I have three rare diseases, they say they are sorry, but I don’t want sympathy from anyone, I just won’t support. I am not that weak to take anyone’s pity; I am strong; I am a warrior.
I underwent fourteen surgeries and radiation therapies. I don’t get to recover from any of my rare diseases like you do when you get a cold or flu. It’s a daily fight for me, but I still stand firm and face everything, hope, and my will to survive always saves me.
Our destiny is not always determined by what happens to us, but how we react to what happens matters. It’s not about what life brings to us, but our attitude towards it makes all the difference.
Life comes to a standstill if you give up hope, and for me, life is a challenge to be met with courage. It’s my will and hope that always keeps me going even after having such rare diseases. So have strong willpower and hang in there; don’t lose hope.