It has taken me almost 30
years to begin writing this. Even now, I am still not sure whether I should
write. However, the truth must be written. Someday. Probably today. Because that
truth is a part of my very life. A very important part.
Such a truth starts with two
words – Neurogenic bladder. These two scientific words mask the ugliness of the
life consequences. They hide the devastating effects it can have on my everyday
life. And more often, they soak me in shame that remains unspoken.
The two words stand to mean
one thing actually: No control over bowel movements or passing of the urine. A
person with this condition, or me actually, well, we are soiled most of the
times. Heck, I am still not ready to state it directly. I shit my pants
almost most of the time and I have no control over it! That is the truth of
this condition.
There you go! I said it now.
Once and for all. Openly. Finally.
For the sake of that little
child, whose name I do not wish to reveal, for the sake of all those children, who
are going to live with the same fears, hurts, solutions, and madness I did, and
for the sake of all Parents of children with Neurogenic Bladder, who struggled
as much as my Mother and Father did, do.
That day, in the fifteenth
year of my life, I saw my father plead the tuition master. Because of my lack
of control, I had shit unknowingly and uncontrollably in the classroom. The tuition
master was very angry. He slapped me. And dismissed me in front of 20 other
children. I cried madly that night. Weirdly, I cried not because my father had
to plead. Nor because I soiled the room. Or because I was slapped. I cried
because I lost an opportunity to take tuitions to study and to make any friends
in life. Later on, I almost failed my class X because of that scar.
In another instance, I came
across a school bully. ‘I will hit you in the balls if you soil the school
bench once more’, a bully once said. I did not care. What hurt me was not his
filthy language or words. I was instead worried that I would no longer be part
of my class students’ sports team. Strange are God’s ways. Because people were
hurting me with words for some reason and I was getting hurt for some other
reasons.
Later on, in my teenage years,
when in class XI, Malaria hit me 4 times.
I lost college attendance. I became much much weaker. Adult diapers were
yet to come into the market. So, I walked into classrooms irregularly,
shivering that the professor may judge me and even beat me. In that fear, I
would soil myself further. I would stink up the whole classroom. I would then
be unable to meet anyone eye to eye. I would keep my head down and buried in
books. I drowned in stories of the R K Narayan novels just so that I do not
have to see anyone and their judging eyes.
Meanwhile, winters were and
are always terrible. I would wake up at 2 am or 3 am, completely surrounded by
piss and shit. I would be too lazy to go to the washroom and clean up. And I
too stinky to sleep again. This is going to be my state, all life – I would
tear up on some days. On some other days, I would manage to wake up the whole
family to help me at 4 am. I felt guilty about that. So, returning their help, I
chose to sit down and study.
College came and with it also came
three floors of climbing each day. Unclean bathrooms led to multiple urinary
infections. Such infections gave more fevers. Fevers turned my body weak. I
stayed away from college and friends. So, I achieved even more judgements.
As if this were not enough, I
was also born with an inability to walk properly. In college, I did not want
others to look at my wet pants. So, I would not even move out of my bench for 7
straight hours. I would be the first to enter college at 8:30 am and last to
exit at 05:00 pm, so that no one sees me or judges me. Friends helped, no
doubt. And I am eternally grateful to them. But I grew more and more depressed
& shameful within. I buried myself in my own thoughts, books, studies, and
loneliness. I barely spoke to anyone. I learnt to write sitting in a little
temple. I threw away the pages on way home.
Meanwhile, I unknowingly picked
up an unhealing injury on a trip. The injury turned into trophic ulcer. So, medical
expenses piled up. The insurance would not cover because of pre-existing
conditions. Worse, the ulcer required me to be dry and minimize movement,
limiting the times I would visit the restroom. Each time I visited, I would also
have to re-bandage.
So, on one hand, if I stayed
dry for the wound, I would stink up myself. If I visited the washroom, I would
have to re-bandage and the wound would not heal easily. A Catch-22 situation.
Subsequently, I stopped
wearing shoes because I needed to prevent the injury from getting infected. I
needed leather seats, rubber sheets everywhere I sat to prevent the place I sit
from being soiled. I would refuse to get into cars out of embarrassment. I kept
away from events, meet-ups, and was on heavy antibiotics for the ulcers. I
turned weak. Very weak. Winters came and punished me more. Summers would dry my
soiled pants and make them stink. And I would not be able to walk or find
privacy to change regularly.
I would tear up reading,
writing. I found some healing in Music. I turned bitter and sarcastic about my
own life. I would become angry at every little thing in life. I wanted to run
away from it all. The only people I visited were doctors.
Such doctors suggested
catheterization. Regular emptying of bladder. And a few more solutions. All
tried. All tested. All helping a little. But never solving the whole. So, I
learnt to dislike doctors. And I learnt to dislike people in general.
Running away from everything
was the only solution. So, I travelled to the other side of the planet. Literally!
I went to USA to do my MS. I fought my own people to see that choice through. I
took many hurts in that process. I also gave a few. No matter what, I left to
Madison. And there, one fine day, I met religious people too. They offered to
help on my ulcer. In doing so, they pitied me. I hated that pity. I found God
as a silent, cruel witness to my fate. I became even more arrogant. I looked
for my own imaginary heroes. I found and worshipped Karna of the Mahabharat.
A few years in USA later, I
returned to India. I was 25 now. I was admitted to a renowned business school.
Yet I lacked any form of confidence in life there. Every few hours, I would
disappear from study group meetings to change. I would not be able to sleep
through the nights. I skipped study group meetings. I skipped homeworks and assignments
because I was too busy taking care of my injury and other unmanageable needs. As
I did so, I knew and heard acquaintances speak of how I stank. I listened to
how others spoke behind my back about why they are unable to even bear my
stinking. I tried to tear up. But I couldn’t give a damn anymore. It is not
even my fault that my neurological bladder does not work, I told myself.
Why I survived all this, I
would not even know. Why the shame did not break me, I do not know. I hated my
life. But may be, just may be, I also loved living too much.
God. Friends. Money. Myself. I had lost faith in all of
them.
Imaginary characters became my
world and gave me inspiration.
Karna. John Nash. Tyrion Lannister. James J Braddock. Severus Snape. Albus Dumbledore. Howard Roark. Jack Sparrow.
Their stories that
kept me going. I read and re-read them. I watched and re-watched them. I
drowned and drowned in Music about their emotions. I would also write madly occasionally and burn my writing some days.
On other days, I attempted peace and would put up my own quotes on social media.
As late 20s hit, I tried to
find solace in religion. But I found none. I hated Krishna for bringing ‘Karma’
into Indian culture. I came up with my own belief system. ‘There is no life
after death’, I told myself. This is the only life you have Sai, and you may as
well live and experience it – I repeated each day.
Meanwhile, Love came along
too. More than once. Only to break me further. Only to hurt my own view of
myself and my character. Insanely. Nevertheless, like a creature, I still
lived. Like a broken, soiling, shameless insect, I struggled and struggled to
retain my own non-existing self-respect. I read Kafka’s ‘Metamorphosis’ and
began to laugh at the dark humour in it. I am the insect – I felt some days.
Time and innovations brought
Adult Diapers into my life. Somewhat of a relief, they turned out to be. Yet,
the skin rashes and burning on the thighs because of the urine continued. The
stinking was relentless. Winters and weaknesses only became worse and worse.
But I was a working professional
at a Big-four firm now. I made money. Good, Hard-earned money. So, I would buy
the craziest and costliest perfumes to get rid of the stink. Ironically, I
would also get suspicious of anyone who would gift me perfumes. I broke
friendships on that so that I don’t lose my self-respect.
And one day, out of nowhere, I
did not see why my being a consultant made a difference to anyone. To any life.
I saw that my inability to walk took worse turns at work. Will I do this for
the rest of my life, I wondered then. I entered kitchen and tried to cook,
realizing how thoroughly useless I am. I feared how my last years would be. I
began to crawl to move from place to place because my legs have now started to
fail in bigger ways. I would crawl in washrooms. I would struggle to stand. Occasionally,
I would skid, fall, and hurt myself.
I wanted to cry. But I could
not. I would not. In fact, I felt nothing. I burned people with sarcasm to make
up for my own shortcomings. I burned myself for being who I was. And I felt a
strange sense of calling and love for those who suffered. Helping the downtrodden,
turning the hopeless into winning positions, beating impossible odds to help
realize other people’s dreams – these aspects satisfied my ego and gave me a
purpose.
Even as I explored difficult entrepreneurial
dreams, on an unknown day, I realized I hated dogs. I hated people for speaking
about dogs. Dogs reminded me of myself. Their walking, my crawling. Their
desire to be loved. All aspects of them were a sign of my own life. I hated
everything about them. I disliked people suggesting me to have a dog. I disliked
myself for disliking kind people’s well-intentioned suggestions.
Meanwhile, laurels came and
went. Merit Scholarships, Adventures in Antarctica, Great Degrees,
Entrepreneurial Success, Directly working with dreams of over 2000 young
people. Making a true difference to at least 20 of them. May be even more. A
few moments made me cry tears of joy. A few other moments made me puke on the
middle of the streets.
And so, the years have passed.
I am in my 30s now. It has been over a 1,000days since I slept at my own home
now. A resolution that I have happily succeeded on. To give me parents at least
that bit of happiness – my absence and my lack of constant need of them. These
1,000 days also brought me friends, made me lose friends. Brought me
perspectives. Gave me peace. Took away peace.
So, three more severe winters
and worsening health conditions later, I am still piecing my life together.
Music, Writing, Reading, Binging on my favourite heroes and heroines
repeatedly. And off late, collecting paintings of Saraswathi.
Nothing washes away the stink
and the shame. Nothing ever will. People have started to use the word ‘inspiration’.
Truly, it means nothing to me. Each day, I read obsessively, teach passionately,
watch movies happily, learn about people’s stories and their journeys curiously.
Each night, I drown in my own misery of the so-called ‘Karma’, I was born into.
I thought I would be used to
the shame and embarrassment now. But the truth cannot be further. I still am
the scared, angry, and hurt kid – who was removed from the tuition classes for
his medical condition. Who was bullied by a few, ignored in sports teams,
stared by strangers, judged by acquaintances, limited by opportunities, and
disgusted by myself.
And then, cruel jokes began to
happen. Years later, a boy arrived at my own coaching class. He had the same
condition as mine. I could see the embarrassment in his eyes for he shared the
same situation as mine. It is alright, I said. I knew my words did not make a
difference to his embarrassment. Later on, I also met a little girl, whose
parents are going through what my parents did because of my medical condition. ‘Encourage
her to study. That is the only way she will find peace and calm in her life’, I
commanded them and left the hospital in further hurt. It was easy for me to say and difficult for them to live, I told myself.
These days, sleepless nights and
disgusting smell have begun to give me more headaches. So, I started to rely on
tablets to lose the headaches. Because of the tablets and irregular night sleep,
I sleep in the noons. Because of the tablets, My nerves have weakened. I have also put on weight. The weight brought
backpains. I fall more often in the washrooms. I achieved new injuries. And so, more
medications. A vicious cycle.
Through all of this, I heard a voice within. Shame, Shame, Shame – a voice
screamed at me whenever I became alone. And so, I played the music a little
louder, hoping the noise cancellation headphone will cancel the noise within
me.
Nothing worked. Nothing ever
will. So, a few more years of this, I have to live. And as i look into the second half of my life, I realize a truth. A truth that some lives are not meant for
happiness. Some lives are just meant to be endured. Endured against all shame. All challenges. All failings. All
loneliness. And all lack of love. Just endured, my dear Sahana.
What is such endurance worth,
you may then ask. I have no answer. Not for now at least. For now, I want to live and am trying to live. I am trying because that
is what my parents, sister, friends, heroes and heroines taught me across their
own life, novels, movies, music, and stories. So, for their sake, I will breathe.
Even if that breath stinks of my own shit.