My Life Story
“Lehron se harker nauka par nahin hoti, himmat karne waalo ki kabhi haar nahi hoti”
Cover Story At Day & Night News Channel (Please bear for low recording quality)
This has been a motto of my life since childhood. And it is indeed very true in its own essence.
Myself, Sumit Mehta. I am a 29 year old boy and blessed with a mysterious disorder which is slightly close to Congential Myopathy. I am an independent IT consultant and a software engineer in India. I have done my Masters in Computer Applications (MCA) from IGNOU. I am also a graduate in Indian Classical Music and have undergone formal training in singing for 9 years regularly. Professionally I chose computers as my career as I am very passionate about programming and developing software.
My life has been very simple and full of love. And I have enjoyed every bit of it. Today, I will share some unforgettable moments of my life with you and the difficulties that I faced and their outcomes and how God and my family helped me at every step of life. The reason of my writing is to bring into light two things majorly:
- If you feel that you are not a disabled person, you can do a lot in life.
- Always have faith in God. He is always with us, in good times as well as in bad times.
Though I don’t think I have done anything that anyone can get inspiration from my life as I treat myself as a very ordinary human being but still I will share some moments with you.
My family is a small nuclear family. We are two brothers. My brother is married and has a 10 year old daughter. He is settled in Delhi while I am living with my parents in Panchkula, Haryana.
I am blessed this physical disorder since birth. I was referred after my birth to PGI in Chandigarh and doctors said that its one of rarest cases as normally such disorders happen to be at a later stage of life. But I treat it in a positive way that I am really very special to carry a rare disorder. First few years were very difficult for my parents as they had never expected such a thing after having a first normal child. They went for every possible treatment at different hospitals and doctors, be it Allopathic, Homeopathy, Ayurvedic or even the Tantrik and Ojha. But doctors had already advised them that this disorder didn’t have a treatment. After trying for their hopes for a few years, they settled down and accepted the things as they were. Fortunately, I was blessed by a normal brain and every part of my body grew like a normal person except muscles. I am physically very weak and the difference in my body as compared to muscular dystrophy patients is that they look normal physically but their condition is worse than me. I look physically weak but I can do more work than them if I am transported from one place to another. By God’s grace, my condition has improved over time and not deteriorated. But still I am more than 70% disabled.
My education started at home. My parents were worried to send me to normal school. Their worries were right. Because during young age, children sometimes can’t take the innocent tease done by other children and so it can leave bad traces in the mind that affects the whole life. So initially, people living nearby my place started teaching me, some for money and some without money. There was a dedicated lady who used to work really hard for me and used to prepare question papers for me so that I could feel the pressure of examination and the school environment. There were also a few more who taught me and made me ready for schooling.
Besides education at this time, I was very much loved by people living around our home. There was a mohalla kind of environment and I used to sit at the top most bench and see the whole street and I was very talkative and every passerby used to talk to me. There were some young girls who used to take me to their homes and I used to spend full days with them. They used to treat me like their child and brother. They used to take care of me even when in times of emergencies, my parents were not there. Here I want to highlight two points. One is that my parents were never shy to show me off to the people. They never kept me in the four walls of the house. In fact they also got me a tri-cycle and I used to fiddle on it and sometimes even cross kilometers on that with my friends. There was a routine that we all friends used to go to temple every evening and sing bhajans and perform a full arti with a small dholak that we had. We were all around 9-10 years old that time. Second point I want to highlight is that most of us feel that people sympathize with us. May be some people did have sympathy in their hearts for me, the ‘bechara’ kind of feeling but I always feel that I was purely loved and not only sympathized. Some sympathy comes out naturally which is not bad if it is accompanied by love, affection and dedication.
In the year 1992-1993, I was admitted to Bhartiya Vidya Bhavan, Sector 27 Chandigarh which is in itself a very renowned school across city. My dad did a real hardwork of dropping me and taking me to school every day out of his busy and hectic private job. The school was at a good distance from our home. I was admitted to a special cell for mentally challenged children. Though initially I was not very comfortable with mentally challenged children but during those years, I realized that mentally challenged people are real gifts to nature. In fact I would say that they are here to balance the cruelty of the world. I can’t forget their unconditional love. After a few days from my admission, they started loving me so much. I still remember that when my car used to enter the school and my dad used to take out my wheelchair, a bunch of my classmates would run to my dad and fight amongst them to decide who will take me inside the school play ground. They were really care takers of me in the school and used to protect me from those children who were severely mentally challenged and could harm me. The teachers were also very loving and caring and gave me every possible chance to show my talent and skills.
I also started learning sketching and music during this period due to the insistence of my teachers. I started learning sketching from someone in Panchkula and music at Gandharva Mahavidyalaya, both in Sector 10, Panchkula.
In fact a very funny incident happened at the first meeting with my drawing sir. After looking at my hands, he was seriously in doubt whether I would be able to sketch or not. He asked me to draw an apple. I sketched it successfully and he was very surprised. My dad asked him ‘Chalega sir?’. He said ‘Chalega nahi, daudega’. Hahaha, me and my dad never forget that incident and his words. And I always thank God for such beautiful moments of my life because it was only himself who was doing or giving me the energy to do this.
During this period, I got a number of chances to participate in drawing and singing competitions and won prizes. I got an opportunity to perform in front of Mr. Chibbar, the then governor of Punjab. I was also interviewed by mostly all newspapers and also at the radio station, Chandigarh where I also got a chance to perform classical, however that was a few years later. I also managed to win 2nd prize in drawing completion at city level and then 3rd prize at the district level during 1997-1998 and went to Kaithal to collect the award. I performed at reputed centers like Chandigarh Tagore Theatre, Maharashtra Bhavan and also received a special excellence award at district level. I was also offered a scholarship from Army school but I couldn’t accept that as my parents felt that I was not ready to fit in normal students then.
In the year 1995-1996, me and my parents realized the need of proper schooling as the schooling at the special cell was relatively weaker. Considering my future, my parents got me admitted to a normal school, called St. Michael’s School which was located near my home. It was a small primary school and I studied there for 3.5 years.
The first day at the new school i.e. 7th July 1995 was a terrible day for me. That time I couldn’t speak English and everyone was talking in English. I tried speaking as I could understand everything. But I still remember I was given my first recital on Rakshabandhan and my teacher used to make me feel better than others. The behavior of other children was a real surprise. After some initial hesitation, I got the same amount of love and affection from them. They never made fun of me and always loved and helped me. I want to highlight a point here that if you are positive and consider yourself as one of amongst others, society accepts you very well.
I still remember that on my first term exam, I fell ill due to the pressure of normal studies. I could attempt only two exams and passed the exams on margin. But it was a continuous support from my teachers and parents that in the second and final term exams and also in the following classes, I scored the highest marks in my class. I really thank my teachers and everyone for this.
I left the school in 1998 after passing my 8th standard and then pursued my studies through correspondence studies. I completed my 10th and 12th from National Open School. By the year 2002, I passed my 12th and also became a graduate in classical music, thanks to my music teachers Sh. Arvind Sharma and Shmt. Anita Sharma.
If I could do this, it was not easy. My parents were a real support for me. I also recall one incident that will show you what important role my parents have played in my life. It’s around 1994 when there was an occasion of my cousin’s marriage. I was playing with my cousin mates and they were running here and there and I was also running on my tri-cycle. Suddenly they climbed a step and moved towards the garden but I couldn’t go there and felt depressed. I landed myself around the gate and I was crying. Suddenly my mom discovered and she asked me about the reason of my crying. I told her the entire scene. She said just one thing to me “Why do you think you can’t do what they can do, why don’t you think that you can do so many things that they can’t”. And to be honest, that was the last day when I cried for my disability. Since then, I started believing that I am a normal person. Those words by my mom settled in my mind very deeply. I always thank God that I have been blessed with such a beautiful life where I had all the facilities and financial backing was good, I got a lovely brother who always loved me so much and somewhere he also had to sacrifice his childhood because my parents were more inclined to me and most of all, my parents who took me everywhere and always made me feel that I am just like others. Whatever I could do, it’s all because of their hard work, love and care. I deserve nothing out of this.
One more person without whom my life is incomplete is my uncle Mr. Sudarshan Gupta. He used to learn music with me and later when I left the music school, he still followed up with me and he is my real Guru and guide. I look at him as a father figure, through in a form of a friend and he has always been with me in every tough situation of my life even after migrating to the United States. The strength that I needed to move my life was given to me by him in a major way.
Moving ahead, in 2002, a big turnaround came to my life and small box called ‘Computer’ came to our home. I started learning computers and slowly and slowly I found that this is what I wanted to do. No doubt music was always close to my heart and I always wanted to be a performer but not teacher but due to physical limitations and keeping in mind the comfort of my parents and also my interest, I decided to choose computers as a career option. However those days I was very much stressed as I couldn’t decide convincingly and people who knew my music background wanted me to go in that. But I played the biggest gamble of my life and started working for it. This is where the real challenge of life started. Up to now, I got everything easily. But now the life started showing the difficulties. The biggest problem was that it was not easy for me to go out and learn computers as majority of the centers were located at top floors and there was neither a ramp nor a lift. This is a point of highlight that it is very disappointing that government pays a little attention to the needs of the physically challenged people. Later, me along with my friends also appealed to the local court to make the city wheelchair compatible.
So I started learning myself. I also experienced some hard people who promised me to teach or help me but didn’t do that. I felt really bad to see this gesture though I still thank them for showing me the right path at least even if they couldn’t keep their promises. I started learning designing first and later went deep into programming. I tried my hands on languages like C, C++, Java, VB etc. I still remember that I made my first software for an inventory warehouse and got Rs. 4000 for 45-60 days work for that and my family was very happy that day. However that software couldn’t succeed much and I was very depressed. I didn’t lose heart and went ahead, did improvisations in my techniques and my second project for property dealers in 2005 was a success then.
I realized that keeping the job consideration into hand, I needed to have a degree in hand in computers. So after a gap of three years i.e. in 2005, I took the courage to go for my second graduation i.e. BCA from IGNOU. However it was very difficult for me to resume studies after such a long time and that too of a specialization branch i.e. computers.
I started my BCA in 2005 and also pursued my research studies in programming side by side. Someone from US told me that till now I was not good in basics of programming even though I started making software, so I took his comments seriously and started learning Java.
During this period i.e. 2004-2005 one of the best things of my life happened when I met the then president of Chandigarh chapter of Indian Association of Muscular Dystrophy (IAMD) Sh. Gurbir Singh Kochar after he read my interview in ‘The Tribune’ and called me. He told me about IAMD in detail and in 2005 I got a chance to meet Miss Sanjana Goyal, President of IAMD. I am attached with them since then and my life is not complete without IAMD family.
In 2005, 2006 and 2007 I attended the camps of IAMD and I was not in much notice by the people. I was new also and it was only in 2007 when I got a chance to attend the first national camp at Chail. One thing that was one of very new experiences in my life was travelling with a group in a train for Jaipur and Jodhpur camp. Both the camps were awesome, especially Jodhpur camp as I was also assigned duties for the first time. But my journey with the group and that also in train after 15 years was a remarkable experience for me. IAMD also brought many new people to my life and many of them became my very close friends at personal level.
In 2008, I completed my BCA and till now, I was a bit closer to Miss Sanjana Goyal and started participating in some small activities. I was keen to be an active part of IAMD though I always felt (and also feel today) that I was a useless person for them and I couldn’t do anything for them. But they always motivated me and encouraged me and it’s just because of that today I get chance to speak to so many young kids for their career and other type of counseling.
IAMD brought significant changes to my life. I could never feel that I can live without my parents for a couple of days outside. But on the endeavor of Miss. Sanjana, I went to Solan to participate in a program organized by the ‘Art of Living’ and represent IAMD there as a member. I stayed at her home for two days. I was completely alone there with none of my family members and I could manage to stay without any problem with the supportive help of their care-takers. That was the day when I actually realized that I can also live a life independently if I have an attendant. Besides this, IAMD made me aware about the usefulness of a powered wheelchair and today, I am almost 75% independent in my home due to that.
IAMD has a unique way of inspiring as most of the members managing IAMD are themselves persons with MD. Since they have seen the challenges themselves, they are the right people to inspire others and what they say is actually a true reflection of their own lives.
The year 2008 was the best year for me as God made a turnaround and I got my first job in an Indian IT company but operated from US. My job was unique in sense that I was given a job of a regular salaried employee but I was allowed to operate from home. I still remember that people used to discourage me that I won’t be able to get a regular job at home. I used to feel down also but I always had hopes. I knew if I am honest and hard worker in my work, God will never let me down. And God as always, moved his plan in my favor. I worked in that firm for one year and learnt a lot of business techniques, client dealing and handling and I was given full opportunities, in fact more than others to deal with projects and clients.
Then in 2009, I got a big offer from a Canadian firm this time. I accepted the offer, though my old company didn’t want to leave me but offer was so good that I had to switch over. The nature of job was same but I was a manager here and so my responsibilities and work was a lot more versatile.
In 2012, I decided to work as an independent consultant. Now I am doing independent IT consultancy with freelancing. I aspire to form a company very soon.
In 2009, I also started my MCA which is complete by now.
So that’s my life story in brief. One thing I want to mention that it is only your belief that makes the difference. Consider yourself as being loved and being a normal person and then see the magic. In my life, lots of miracles have taken place by the grace of the divine. If you look at my hands, you will think that I can’t write but I write my exams my own and finish them in the normal time frame of 3 hours. I took admission in general category and not physically handicap category. It’s not easy but it’s also not impossible. However I have such a strong faith in God that he is the only one who operates me. I am not intelligent enough to complete my studies from 8th to MCA without any classes (except Mathematics). It’s all his blessings and I feel his presence in my life that he teaches me when I am studying. It is his magic that I feel that I am nothing less than anybody. And of course, as I mentioned above, the love and care of my parents also played a major role.
My friends and relatives have also played a major role in my life. They never make me feel like I am some different than them or their children. My colleagues also take me as a normal person. I never face any kind of discrimination in my work. Of course little bit of adjustments are inevitable part of life everywhere but one has to adjust those and be at peace.
Today at 27, at this young age when people get married, it is always difficult to maintain your state of mind. Like everything, marriage is also an important part of life. It’s not all but it’s important. I am not after it but I am writing this because I want to let people know that keeping a ray of hope is not bad. You will only be loved by someone if you first learn to love yourself. Many disabled people say that no girl would love them. One in my very close relation said to me that I should never think that someone may fall in love with me. But I always have a hope. I don’t expect but hope is there. Because my God gave me everything in life. And even if that doesn’t come in, life is not all about that. But never down yourself by saying that no-one can love you. Looking at my physical condition, anyone will say that it’s impractical and not possible. I know all that and maybe it will be difficult for me also to accept that whenever if it comes. But it’s not bad to hope that someone can love me also some day.
So in the end, I would say that life is too short to live with regrets. Enjoy every bit of it. Realize your strengths and see the difference.