Aarthi Sampath writes about the struggles of living with muscular dystrophy and how the arts helped her cope with her condition.
I have muscular dystrophy. I was diagnosed at the age of 11. A hereditary condition marked by progressive weakening and wasting of the muscles.
At first, my parents decided to take me to an orthopaedist and there they tested me and referred me to a neurologist. At the time, they didn’t have the slightest inclination of the seriousness of my condition.
To our utter shock, my family and I were told there was no treatment yet, and advised physiotherapy, which helps stabilise the condition and maintain muscle strength.
Heartbroken by my diagnosis, my parents supported me wholeheartedly and ensured that all my needs were taken care of. A physiotherapist, who visited me, told my mother that I will not live long. But I proved her wrong as I’m still very much alive. I am not my condition, and positive energy keeps me alive.
I faced relentless teasing and mockery from peers at school as well as neighbours, especially when I would walk, run or while playing games. I was under constant fear while attending physical training class. This one incident still gives me nightmares: I was asked to do long jump in my physical training class and I really made myself a laughing stock as everyone was watching to see how I ran and jumped. Such were the experiences that I gained from society that was always making fun of me.
I could not sit cross legged as even this was such an issue of mockery among my classmates. Since I had difficulty in studying in CBSE my mother sought a state-board syllabus, but problems took a different form as I had to travel by public transport to reach school.
Many a times I would fall, and sometimes I would board the bus by crawling into it. I could not cope in this fast world and did not have many friends. My shyness also kept me isolated. When my own peer group went on to the next stage of life, I failed to get exposure to the outside world.
Despite the terrible struggle, my mother never gave up on me. She decided to enable me to live an active and productive life, trained me how to cook and enrolled me in a beautician’s course, as well as painting classes.
As I learned more about painting and started experimenting with various mediums, and began exploring my creative talents through art and handicraft, I felt happy and passionate. However, my condition continued to get worse as I had increasing trouble walking and couldn’t even lift my arms normally.
A decade after my diagnosis, my condition continued to deteriorate as I would fall frequently, especially in the restroom, and had to wait for help to arrive, because I could not get off the floor myself.
Slowly, I stopped taking classes and began restricting myself from going outdoors. Although I painted at home, I did my best to avoid the outside world completely. Hoping to provide me with the new window into the world, my parents thoughtfully bought me a laptop.
I always admire people for who they are and take inspiration from everyone I meet. My first inspiration in life was my grandfather, as he taught me how to use the laptop and encouraged me to watch English movies, listen to music and entertain myself, so that I would never be bored.
He would spend quality time with me, and we would watch movies or other things together. As my parents were working at the time, he would keep a close watch over me and ensure that he would be immediately available to help me out, if I should fall. My grandfather and parents helped me through the darkest days.
A miracle came in the form of a wheelchair that my family finally convinced me to use.
I began moving around and living my life with enthusiasm once more safe, because the wheelchair allowed me the safety and mobility I needed. Once more, I began enjoying life and pursuing my creative interest like painting, craft work, watching movies etc.
One of my neighbours came into my life like a breath of fresh air and ignited me with positive energy. She was around only for six months, but those were the best days of my life, for she changed my outlook completely and showed me how to be happy. She was instrumental in encouraging us to purchase a dog, my best friend, Shadow. After she relocated, I missed her desperately, but Shadow was able to ease the pain, with his constant presence and unconditional love.
My latest inspiration came in the form of Preethi Srinivasan, a quadriplegic, who is the founder of a public charitable trust that is working to provide hope and improve the quality of life of persons with severe disabilities. My mother had seen a TV programme about her life story and shared the details with me. I began quietly following her tweets, but never found the courage to reach out to her directly. It was only in December 2016 that I finally overcame my fear and emailed her, to congratulate her for her activities, but what I needed most was her friendship.
I was eagerly awaiting her reply, and it came promptly. She was so open and friendly; she gave me her phone number and immediately introduced me to many others living with varying degrees of challenges. All this while, I had isolated myself from the world, and also from other persons with disabilities, but now I have the opportunity to share my struggles and challenges with others who understand what I’m going through.
My physical condition may not have any cure, but the unconditional love of family, approval, attention, and acceptance of true friends can go a long way towards curing the heart of depression and discontentment. And, I am truly happy I overcame my fears and learned this truth in my life.
My disability made me a better person to empathize with people who face similar challenges and to admire people for their optimism; despite of their disability they stay successful. Now after so many years of isolation I got to tell my story. My struggles to survive despite being mocked by a society that makes disability a laughingstock and belittles those suffering from it.
I wish someday mocking and teasing people with disabilities would change and together we could work to make this world a better place.