I am Shivangi, a 25-year-old girl residing in Meerut, Uttar Pradesh. I am an entrepreneur, a teacher and a web designer. My journey till here hasn’t been easy – as I have been suffering from Meningocele since birth. I share my story as I want to spread the message that nothing can pull you down if you have the zeal to stand up after every fight. Even when your opponent is a lifelong, incurable disease.
The disease that I am talking about is Meningocele – it is rare, about 1 in a million babies are affected by it every year. This disease affects the spinal cord of the body and can cause serious maladies – paralysis in lower limbs and hips, lack of bowel and bladder function, fluid build-up in the brain, learning problems, attention span issues and more.
My father, being a doctor, knew the extent of damage possible by Meningocele and also knew that there was no alternative other than surgery within 24 hours of child’s birth. The surgery in itself is tough as there is a high chance of additional damage to the spinal column and instant paralysis. The surgery results of Meningocele are not great either – only about 50% of survived infants can walk. I turned out to be in the lucky 50%. My father’s decision saved my life and also ensured my mobility and normal brain development.
But there was just 1 glitch – the surgery could not reverse the bladder impair caused by the disease. Due to this, growing up brought many challenges. My lack of sense of bladder control distanced all my classmates from me. None of the parents also liked their children to be friends with me as they thought that I was unhygienic on purpose. Even my teachers failed to understand my condition and did not empathise with me.
I would be the only student sitting alone at the back, going unnoticed everywhere – in the school bus, in classrooms, in lunch breaks, in school picnics and on annual day celebrations. All this continued for 10 long years. I could not really make a best friend in all this time. I deliberately did not celebrate my birthdays because I knew no one would come to my party. I was deeply saddened by all these events, day after day each year. But I did not tell about any of this to my parents as they already stayed very tense consulting doctors time and again, with no results. I chose to keep all my suffering in me.
Slowly, it began to take its toll. My academic performance began to decline sharply by the time I reached 5th Std. Maybe my parents felt that I was not able to handle my studies was another effect of Meningocele. But the truth was that I was utterly lonely without any friends.
Hence, during my middle school, my parents decided to move me to my sister’s class. She was a year younger than me. But I moved to a lower class and it helped me immensely. My sister became my best friend, classmate and secret keeper at school. Also, my mother kept motivating me to study. She would always tell me that education is the only thing that can change a person’s mentality towards you. My family encouraged me to keep studying no matter what the odds. My family’s support motivated me and I was able to focus on my academics. There were a few hiccups in between, but I did not give up on anything.
In fact, during my college years, I found a solution to my problem – thanks to the developments in the personal hygiene industry. This increased my confidence greatly and I began to focus a lot more on my hobbies. I realised that I loved to anchor and hence, I actively found those opportunities in college and family settings. I also developed a high interest in cooking and singing. Now, I am often complimented for my self-confidence and go-getter attitude.
Professionally, I am a certified web designer and possess knowledge of software applications and languages. I have recently started my own company which is an online portal for NRIs to connect back with Indian culture. On the portal, NRIs can enrol for courses on regional languages like Hindi/Tamil/Bengali, classical dances of several parts of our country, drawing styles and more. It is gaining traction and I am very excited to grow it. I also work as a teacher in children’s school in the daytime as teaching makes me happy.
Thus, I am living my life fully, because as my mother says – life is too short to be filled with regrets. I want to share a message with everyone out there who is suffering from any incurable medical conditions – Disability in any form is not the best of things to happen to us. But it can be made bearable if we learn to live with it, find our strengths and focus on them. We ought to remember that struggle is an important and unavoidable part of life. Everyone, every single person has to undergo some difficulties. So, we should not avoid our struggles but face them. Please utilise the power of education. A good education can influence anyone’s perception of you for the better.
I also have a message for the rest of the society – Please don’t undermine the talents of anyone who is specially-abled. If possible, make an extra attempt to understand them and their families. They have all the right and ability to live a happy and fun-filled life like you do.
Your DOST celebrates the brave spirit of Shivangi Raghav! Do you have a story inside you of struggle that you overcame with your brave spirit? Share it with us! You never know who can connect with your story and get the courage to keep moving ahead!
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Stay Healthy! Stay Motivated!
