“At the age of 11, I was diagnosed with a rare genetic disorder called Charcot–Marie–Tooth disease at Bombay Hospital. It is a sub type of muscle dystrophy where it is a progressive disease where gradually one looses sensitivities and muscle tissues in different parts of the body. During those days there were no treatment for this disease and there was no way to cure this disease. We used to live in Junagadh and ours was a joint family and I was the only daughter in our family. Once our family came to know about the disease they all supported me a lot and never made me feel as if I was suffering from something very big.
Up to the age of 15, I did normal schooling and lead a normal life. I could only find difficulties in climbing stairs and in getting up once I seat anywhere. It was the same time when I started to realize that I’m not like the normal people and have some form of disability in me. After completing my 10th grade my life changed totally. My elder brother shifted to Ahmedabad and me and my parents shifted to another place in Junagadh. Around six months into the new home and my father passed away and it shook me to the roots. And it is a said fact that daughters are the closest to their father. I was very much attached to him and had a beautiful bond with him but this incident affected me physically as well as mentally. I started having high fever and for straight 18 months I was bed ridden with heavy fever.
Meanwhile we did number of tests and visited many doctors but no one could diagnose the reason behind such high fever. One fine day my mother got so tensed that she called my maternal uncle who lives in Raipur and said “Please come and take her or else she will die.” The very next day my maternal uncle came and took me to Raipur and doctor examined me and immediately doctor said that she is suffering from Tuberculosis. Soon Tuberculosis treatment started and gradually I started to recover from high fever but physically I couldn’t recover. It went on for three months and I came back to Junagadh and did my schooling and later completed my graduation externally. Somewhere in the year 1993 one of our family doctor visited our place and he asked for my reports and told that he wanted to do a case study. He said he can’t give guarantee but he will try his best to make me stand on my feet. He gave medicine and over a period of time that medicines started showing results. I could move my legs and gradually I could walk with support. And he didn’t charge a single money for the treatment.
After few years I could walk with the help of Walker so we shifted to Ahmedabad and I got a job as a receptionist where I worked for four years. Then I took one year of break and did PGDM in Human Resource Management and I got placed at Udgam School as an HR. And since last eight years I have been working with IIM Ahmedabad as a Clerical Assistant. While I was doing my job at Gymkhana, I came to know about IAMD(Indian Association Of Muscular Dystrophy). They usually organize camps for people like us in Himachal Pradesh. I visited their with my mother and attended the camps and that was the time I came to know that this is the place where I actually belong. But with jobs in hand I decided to attend and organize such camps in weekend in Gujarat too. So in the year 2008, I organised camps in 10 major cities with the help of IAMD. Recently in the year 2015, with help of one of my friend I started an NGO called “Udaan” where we empower youth with disabilities and address their needs and problems. So far we have organized camps in Kashmir, Leh Ladakh, Mumbai, Bhuj.
While organizing IAMD camps in 2008, I came across to meet him through one of our common friend. At that time Orkut was a big hit and we started communicating through it. He was eager to know about the muscle Dystrophy and so he started attending camps as a volunteer. Within one week of the meet and he proposed me. But I was skeptical about him and about the relationship between us so I said him to go slow and told we shall see how our relationship works because it was about spending a lifetime with a person like me. But eventually after two years I said yes to him and many things happened in between where both of our families disagreed but finally we got married in July 2010 and today we have three and a half-year-old beautiful daughter. From brushing my teeth to helping me in getting ready to doing core household works, he does it all with a big smiling face. I am thankful to God for everything. And love is all about caring for each other and facing all the problems together. There is no ‘I’ it’s all about “We” in love.
Stop differentiating us and stop excluding us from the society. Don’t look down at us. We are part of this society. We too are humans, it’s just that we have some special disabilities and that’s what makes us different.”
Story By – Pray Bavishi | Humans Of Amdavad