The story of an entrepreneur, a motivator, and a fighter
Muscular Dystrophy is a disease that weakens the musculoskeletal system and hampers locomotion. It causes gradual death of muscle cells and tissues. Calf deformation, poor body balance, joint contractures, and muscle spasms are some of its symptoms and above all, even in the modern age, there is no known cure for Muscular Dystrophy. Respiratory difficulty, limited body movement, and frequent falls cannot defeat spirit of a woman.
To take a human being down, you probably need more than that.
If you do not believe what we say, you should meet the wonder lady Sanjana Goyal, an entrepreneur, a motivator, and a fighter. She is a successful businesswoman and founder chairman of the Indian Association for Muscular Dystrophy, an NGO trying to make life better for patients of this incurable disease. Here are excerpts of Tarun Goel’s conversation with Sanjana Goyal.
From Being a Normal Girl to an Abnormal Girl – the Journey
Special, not abnormal I would say. My elder brothers were suffering from the same disease and I somehow knew that ours was not a normal family. This disease usually takes down more than one member of the same family. I saw my brothers suffering from this problem and I figured out in my school that I also suffer from the same problem. There were 144 stairs in our school and I always lagged behind my sister while climbing those stairs. In other fields, I was at par with my classmates but climbing was something I couldn’t do comfortably. Gradually other symptoms started to show up. My shoes would crack up because it was not possible for me to sit in a squatting position. My teachers used to think that I was imitating my brothers in my walk; both of them had similar problems. By the time I was in 10th class, I knew that the reason behind my slow walk, cracked up shoes, and disfigured legs was Muscular Dystrophy.
I studied like you did, like everyone else. I realized that I was not a normal girl yet I wanted to do everything that a normal girl would and could do. Bunking classes, singing, shopping, studying, I did everything that was within my range, and sometimes beyond it. My friends were my biggest strength and they helped me with everything I wanted to do. I could not walk with books in my hands, so my friends would carry my books so that I could match their speed. I stayed in the hostel for four years during my graduation and post graduation, on my own. No doubt it was difficult to live on my own but in retrospect; those difficulties have made me what I am today. Sometimes pain is also important in life.
The Family Balance
Family has always an important role to play. There were three abnormal kids in our family yet our parents brought us up like normal kids. Ours is a huge family, we are six brothers and sisters and our parents treated us equally. They never gave us any special privileges because they knew they had to maintain a balance. Usually in such families normal kids feel ignored because abnormal kids get special attention and those who are normal, they simply feel sidelined. In some cases, I have seen, normal kids feel that their fault is that they are normal. In our training workshops we motivate parents to treat their kids equally, which is no doubt difficult but it is very important to maintain a balance. My father always told me that your purpose of life is to educate people about your disease. I consider my weakness as my strength because it has given me a chance to spread love around me. The almighty has chosen me to strengthen the lives of patients suffering from this incurable disease.
The Entrepreneurial Bug – Stitch and Style, the Boutique
Stitch and Style, my boutique happened just after my studies were over. I always liked designing and stitching dresses and after my studies got over, my mother wanted me to stitch and design dresses for my sister’s marriage. She simply said to me, “You are so well-qualified now. You are going to handle all dress designs for the marriage.” That’s how it started, people saw those dresses, inquired about the designer and tailor and that was the beginning of my beautiful journey with Stitch and Style.
I can proudly say that people got to know about me through my work. Nobody gave me work because I was uncommon. My work is my identity. In 1992, I opened my boutique, hired tailors, and trained them in my own way. I do not stitch nowadays but my work is still going strong, I have trained people and I outsource my work to them. The best thing about this outsourcing is that my clients know about it yet they do not complaint because my way of training was always focused on quality and not quantity. I have trained many people and most of them are running their independent businesses in different parts of Solan and Himachal. Today, people say that I charge very high for my work and that’s because I pay good salary to my workers.
Indian Association of Muscular Dysthropy – A Hope for Patients
Dr. R Janardana Rao is one of the biggest reasons behind IAMD. I was curious about my disease, I wanted to know each and everything related to Muscular Dystrophy. Internet was a farfetched dream back then, so I used to write him letters. Unfailingly he would write back to me and he responded to every single letter I wrote to him. He came down to Solan and then we started this organization. Another person who helped me a lot to get off the ground with IAMD was Mrs. Uma Baldi.
Ignorance is not always bliss, especially in case of Muscular Dystrophy. Physiotherapy is a blessing for us and ironically we do not know anything about its importance. Our dependency on medicines has made us paranoids. Physiotherapists usually do not give any pills and that’s the reason we do not want to pay a visit. Physiotherapy can strengthen our muscles. It gives confidence to a person like me who is suffering from MD. Not so long ago, I met with an accident and that caused a fracture. Fracture is fatal for people suffering from MD because the chances of recovering are very low, yet I recovered and that’s only because of physiotherapy. I went to Chennai, attended a special camp and came back fully recovered. We do not have any permanent cure for this disease and physiotherapy can help patients to retain strength in their muscles for a long time.
We educate, motivate, and raise awareness; this disease is not that “popular” in the common world so people do not recognize it in early stages. Awareness is the most important step towards empowering people. Our work gives us strength, makes us believe in each other and enables us to enjoy our lives, with whatever disabilities we have. There is no cure, we all know this, yet we continue to meet and share our joys. Our definition of difficulty is different from yours. We probably live in a different world. When I see troubled people around me I tell myself that I am a blessed soul. I only have to worry about living life to the fullest, to make the best of every day. I don’t need to bother about buying a new car, new mobile, largest house in the society, or any other thing that does not strengthen my muscles. There is no cure of this disease yet we people meet because we learn from each other. If I can do it my way, anyone else can also do it.
She moves on a wheel chair. She spreads smiles around her. She wants everyone around her to understand that love is the answer and love is the way.
Sanjana Goyal won the National Award for the Welfare of Persons with Disabilities in 2004. She also won IBN7’s Super Idol Lifetime Achievement Award in 2010.
A Civil Engineering graduate from NIT Hamirpur, Tarun has worked in the hydro power and IT sectors in the past. He loves writing and sharing the positive stories floating around in the society, which usually go unnoticed.
For over 2 years, Tarun wandered around the passes, mountain peaks, dangerous roads, and remote villages in the Indian state of Himachal Pradesh on his motorcycle.