It is my Mum who is the sun and like earth, I have always felt that strange adhesive power, that power of attraction holding us together since I was born. She was my only playmate.
In the beginning, I was a healthy chubby child and she used to play with me.
Dress me up and take different photographs
But then when my brother was born. They fussed over their second child because he was visibly ill with incidents of abnormal electrical activity in his brain due to epilepsy.
I was never a sociable child and was always lost in my thoughts. I never got attention in school and what a fine school they claim to be producing gems of students. Even now my classmates don't pay any heed to me.
This made me terribly lonely as I needed some solicitude against the deluge of solitude rising from below. It felt like I was condemned to live in loneliness, never known before. Black heavy clouds covered my life, thunder rolled and amidst the bustle and noise of existence, I found myself lonesome. It felt grim in the pitch darkness where you couldn't see a single object but still, my eyes twinkled and shone and I took tiny steps ahead holding onto whatever bush or creepers came on the way in my journey.
As I grew up in my aloneness books became my only companion. I spent a good deal of time in bookshops turning over the pages of books, I used to think if only my life were a thousand years long I could read all these books. Two bookshops became my regular haunting place to which I went for an evening walk with Mum and returned loaded with wrapped up books.
The embodiment of "Aum" with the engineer of the Universe, sat on the mountain peak at the core of creation lost in meditation but with his extra eye and wisdom, he watched my every step.
Initially, I underwent a few surgeries but ultimately was diagnosed with a disease which is not terminal in nature but will only get worse.
It started with a nasty brain tumour which I wasn't clever enough to understand.
When Philip K Dick entered my life, his words "Reality is that which, when you stop believing in it, doesn’t go away” touched my brain in the wrong way. I had odd sensations, fidgety and nervous but didn't understand my feelings. I had odd nightmares but told my mother that aliens are trying to get in touch with me so just keep everything shush! I could hear things which others couldn't and see stuff which nobody did! I asked my mother to be sure of that and was convinced either I could see ghosts and hear them or aliens are trying to get in touch with me. I was happy with the thought.
After some time elapsed my mother saw me getting violent partial seizures while in sleep, she called my father and both tried to hold down my body getting spasms but the force with which it was happening they couldn't. After I woke up I didn't remember what happened to me at night. For this brain tumour, father ran across India looking for a suitable doctor.
After fifteen days of admission, when the doctor saw I was reading "Minority Report " in the hospital bed he denied doing the surgery 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.
My father sought out a tiny nursing home in Kolkata with minimum facilities where ultimately the surgery of the tumour was done in 2006. A craniotomy (open brain surgery) of tumours extremely vascular in nature was done. A biopsy would make them bleed resulting in a stroke. I woke up with paralysis on the left side. After the craniotomy, I experienced total numbness on my left side and I couldn't close my fingers and make a fist. But this was sorted out by proper physiotherapy and exercise and I got back the control of my limbs but even now I don't have sensations in my fingertips.
Currently, I am suffering the consequences as Leptomeningeal dissemination of hemangioblastomas (HB) of the central nervous system (CNS) which is extremely rare. Between 1902 and 2013, approximately 132 cases were reported. Without previous surgery such cases haven't been reported, it is due to spillage and spread of tumour cells through the cerebrospinal fluid(CSF) space in patients with a genetic predisposition to the condition. I made up my mind to keep myself well-informed so that I don't get into such situations.
I thought if everything is written in destiny or it is my past life baggage why should I pray?
God smiled,
"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 you are suffering is the karma of her past lives, it depends on your reaction towards your sufferings, how you are going to cope, get along, manage. Maybe on some pages of your life, I have given you lifelines and I want to be with you to watch how you are coping or help you."
It was God's wish he wanted to be with me in every struggle I face, hence he made my mother through whom he can be with me always, also during my ordeals. Thus, she's an exclusive creation of God only for me. When I am ill her thoughts gladden me and give me the will to fight and the warrior inside me fights till the end.
She prayed that I get my liver transplant.
Took me out to the Kolkata amusement park after the transplant.
Cared for my high fever before MDR-Tb was diagnosed
Dispelling fear out of my mind.
She has pulled me out of kidney cancer on her own.
Fought with the nagging landlord together
Went to Medanta every day for dressing the wound of debridement in the wintry days of December and January.
Took me to Medanta immediately when I got a sudden pain at the site of debridement early in the morning.
She quit her favourite sweets and ice cream because I can't have them.
We had several adventures together
My pain and worsening disease sometimes make me cranky. But she is the only one who understands what interesting things are going on inside my head. The nice crackling sounds of burning logs or the metallic confusion. Telling my doctor about my excruciating painful and odd life, and the burning tongue with the bump on it which doesn't move properly no matter how much I try or while trying to swallow 20 pills getting choked and every struggle makes me exhausted.
If I tell someone about my current experience with my brain it looks like a film script and their reactions are
But Mum treats me seriously, even my crankiness.
I'm afraid that the road looks longer
I choke on all the words which I never let reach my lips
Mum only can feel the pain it inflicts
In my madness
With her calmness
She lends me her ear
Putting meaning in my meaningless life
Ward off my silliest fear
Her unconditional love
Her smile makes the journey worthwhile
Never let me break down and cry
I shall stay strong because the road is long
Aye, we'd reach together by sunset.
It is because of her care I am living and because of her daring.
As anger which comes in with the pain and weird feelings ebbs and flows I feel ashamed because anger, bitterness, outrage is a part of my brain disease. I find the sun shining gloriously, singing birds and celebrations with mum so delightful. I understand mum had been exploited and overburdened by her in-laws, how she had taken care of me 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. I can realise her pain is indescribable, unspeakable, disgusting but so is mum's life-long struggle.
Every day I pray for the same mother in my next life, if it really exists. Perhaps in the next life, I'll be able to really care for her, as of now I am dependent on her in many ways.
We are the Mum and Princess
The fearless survivors who had many adventures in life.
Where father gave up but mum never did and still treats both children equally as her heart cries for her son who is far away from her.
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