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.
