My Story: I Remember The Nights I Have Forced Myself To Fall Asleep Even As My Tears Had Dried Up
“When I look back at life now, I realize that all the hard times and the tough phases in
Life led me to
Who I am Today,
What I am Today and
Where I am Today
My life is a simple one, just like each one of yours, except for the fact that I feel it is bizarre. Why do I call it ‘bizarre’, you will know as you read through. We are four of us at home, my parents, my younger brother and me. When I was a child, life to me was just school and home. My world, back in those days, was very small. All I would do was study, watch television, eat and sleep.
I began to analyze that my world was really tiny, only once I entered my teenage. I was an odd one out almost in every place, amongst friends, amongst the entire bunch of cousins and so on. It was said that I did not possess the swag element in me, I wasn’t following the trend, and I didn’t have a cool gang of friends, to hang out, so on and so forth. Since I was almost neglected among friends and family, I was disturbed. It wasn’t easy for me to take it. I was broken, trying to put up with all these things. I remember the nights I have forced myself to fall asleep without realizing when the tears had dried up.
I started wondering as to why only I was treated indifferently almost every time and everywhere. I wanted to go deep and know the root cause. Introspecting, analyzing and reflecting, based on my past events helped me. I discovered that it was the presence of my younger brother that had led to all such events in my life.
Now I knew the cause and the negative events following the cause. I took a huge decision in life. I chose my brother and this simple life over the fake love expressed by people.
It is said that all human beings have been given this life unto them to meet a purpose. I was fortunate enough for having known the purpose of life well ahead. My Brother, his disabilities with which he entered this world proved to be the purpose of my existence.
My Brother is 16 years old now (2 years younger to me). He was diagnosed to have a very rare syndrome in this country, called the DAMP syndrome (Deficit in Attention Motor and Perception) right back when he was 8 months old. He has no physical disabilities, though his cognition is poor.
He is severely mentally challenged; a 16-years-old with a brain of a 6-year-old.All these issues have made his life tough. The society tags him as mad, since it is unaware of the underlying medical cause. Taking him for an evening walk, taking him for an outing to any public place is a huge task for us. We need to prepare ourselves a thousand times, that no matter how people stare at him, no matter what they call him, it is his happiness that we need to focus on.
My Mother is more than what you call an inspiration. She had no clue she would have a child with multiple disabilities when she was 23. She geared herself up, and started taking my little brother to all possible therapies. She volunteered for 8 years at the special school, which my brother attended. She was a 10th pass out, and so in 2012 she did her 12th grade at NIOS (National Institute of Open Schooling). She then pursued her course Diploma in Autism Spectrum Disorder and has proved herself to be a professionally trained special educator. Though she is not working currently, she helps other parents by giving them counseling, strategies and ideas to make their children better in all aspects. Dad, a business man, is a calm and composed introvert. He has been a constant source of support.
There was this phase of time when my mother felt sick, and I had to be more responsible, rather be more like a mother to my brother. I did everything which my mother did for the past 28 years being constantly with him giving both physical and verbal support the whole time. Till this point of life, I kept criticizing my life, complaining about the things which weren’t going right. Perhaps today, I ACCEPTED, accepted that my life isn’t like others’, life isn’t easy, and life isn’t that bad. I realized that hanging out with friends every weekend is not life, having perfect hair is not life, having a normal life is not a big deal. I realized that everyone has problems in life, everyone. Today my brother is my inspiration, for me to join a paramedical course BASLP (Bachelor in Audiology and Speech Language Pathology), which deals with persons having hearing & speech disabilities and also other mental disabilities.
He is the purest soul, not knowing what it is to lie, not realizing what it means to hate, not being judgmental. He spreads love and happiness. He greets and socializes with every person he meets.
If I could call him my brother, I consider myself to be the most blessed sister on the whole planet.
My every learning was from him, my every little dream started because of him. My world revolves around him.
He will leave me and go back to heaven one fine day, but He will live in me forever and ever.
I’ve never spoken about my brother publicly before, but now I feel the desperate need to do so. I feel there is zero person awareness in the world. We talk about equality; we talk about big big things which aren’t in our control. Why are we letting lose the million tiny things we can do to make this world a better place to live in.
My personal cause has now become a social cause, to create awareness and serve people with disabilities. Not because I want to be sympathetic, but because I want to be empathetic. I want to help people with disabilities to live a happy life in spite of their disabilities. I want to see their abilities win over their disabilities.”
Submitted By – Chetna Bafna
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