I was five when I was diagnosed with it. ‘Fatal’ was the first complicated word I learnt when I was five. Another was ‘inveterate’. It had started with one injection a day, for every single day. 7.00 am sharp, half an hour before my breakfast. I was pricked sometimes by my mom and other times by my dad. Until I turned eight, the shots turned to two a day.
I have lived with the disease for 20 years now. Trust me, over the years I have learnt to wear my strength over my darkness. I have lived with a constant fear. I have managed the disease well. Doctors, medicines, some sacrifices and the constant support of dear ones have been crucial in all of it. It doesn’t hurt anymore (emotionally or physically) when I am faced with reality. For you learn to live with the pain. But what I am still not able to manage is the ‘fear’ of the society.
I was a topper throughout my school life. Some of my classmates thought that the teachers favoured me with the marks because I had an illness that couldn’t be cured. Well, they knew nothing of the hours I spent studying to top my examinations because I did not want my illness to be a good reason for a bad result. I was tagged with multiple titles, excluded from various activities and outings and I always ended up blaming my disease for the same.
Meanwhile, I started writing and it was my escape from the things I could not do.
The little things that in reality did not matter, but in a way they did. Over the years, art has given me comfort, it has given me the reason to believe that I hold the power of creation and my mind has the power to create, live and relive things that I otherwise can’t. Then again, I fear. I fear what people think about what I write. I fear about them sharing it across various groups and ridiculing at the things I wrote. I fear them making fun of me and my words and my colours. Then I regress into my cocoon of darkness because I fear.
When I decided to become a Chartered Accountant, my parents and doctor thought that it was a bad idea. They wanted me to settle for something simpler and easier. I chose to go against them. Despite several warnings, the journey was not easy. My physical body and my mental health were not normal. I had to go beyond myself to complete successfully what I had chosen. My first failure came when I was not accepted as an “article” by one of the firms because they thought that my disease would render me incompetent. I feared “reactions of people” then. I feared “rejections”. I successfully completed what I had decided upon, working more than what was required. I had to prove to myself that my disease could never be the reason for my incompetence.
When I first had feelings for a boy, I feared to tell him about it. For the fact that he would accept it out of ‘sympathy’ or reject me for the flaw I had. My fears taught me to suppress my feelings and I would suffocate without telling anyone anything. My fear made me lose my self-confidence. There were times I felt so sorry for the girl in the mirror who did not express herself.
I have learnt that inner beauty- strength, courage, love, kindness and other virtues are much more beautiful and magical than the exterior appearance. I have turned into a person who doesn’t put an effort to be liked or loved by someone because I fear they'd know too much about me and then abandon me.
I am financially independent now. I take care of myself and I am adapted with the most modern medicine available in the world from the last seven years. I no longer have to take shots after every meal. I am mature enough to understand that it is okay not to be understood. It is okay to go watch movies alone or have dinners in restaurants alone if it makes you happy. But it is not okay to live in fear; to live in the fear that your flaw is the reason for all the wrongs in your life. Just because you are not fortunate enough to do a few things in life, you are ridiculed by people. No, I do not deserve it. Neither does my mind or my body.