Swarnalatha J, who was diagnosed with Primary Progressive Multiple Sclerosis in 2009, is 75% disabled now, but that hasn’t stopped her from achieving her goals. Here she tells us how she sets an example for others of her community in handling depression and looking forward to life even after disability.
Could you tell us about the early symptoms and diagnosis of your Primary Progressive Multiple Sclerosis?
It was in early 2007 that the initial symptoms manifested themselves with loss of balance while walking, poor grip while holding small objects and spasticity (muscle control disorder) throughout the day. After blood tests and scans, it was first diagnosed as Restless Leg Syndrome. My condition worsened and after a sudden unexplained fever which left me partially paralysed in 2009, I was diagnosed with Primary Progressive Multiple Sclerosis. It was devastating to know the effects of Multiple Sclerosis (MS).
What were the challenges of living with MS -and how do you cope with them?
Post diagnosis, the only constant has been the deterioration of physical condition. I had been very independent since my childhood, earning at the age of 14 through home tuitions and took a fulltime job at 19. The thought of being dependent for even the smallest need, makes me feel helpless at times, but then I realise everything is for a reason.
If not for this physical pain and mental agony, I wouldn’t have been able to empathise with people affected with chronic illnesses. Most importantly, Swarga Foundation (a registered charitable trust in India formed to improve the lives of patients affected with Multiple Sclerosis & neurological diseases) wouldn’t exist.
Meditation calms me down and has helped me accept things as they are and to let things go which are not meant to be. My foray into social activism, singing, photography and writing has helped me tremendously in the healing process, since they channel my energies into something really positive. Concentrating on the solution, rather than the problem has made me proactive. For eg., I can’t hold pen well and signatures in the bank don’t match. Hence, I depend on internet banking.
One of your children was born after you were diagnosed with MS. Was the pregnancy more challenging as a result? What were the difficulties after the child was born?
My second one was an unplanned pregnancy, owing to the progressive disease and disability. After initial concerns, we decided to welcome the baby into our lives. One of the foremost challenges was to be physically fit during pregnancy. I changed my routine and lifestyle, included a healthy diet, meditation, pranayama, one hour of yoga, one hour of swimming and one hour of walking with the help of treadmill in the gym (since I could barely walk without support), spaced out throughout the day. I also had additional responsibilities of cooking, taking care of the household and my first born, Gagan, till the last day.
The doctors advised a C-section to avoid complications and a special team of doctors including gynaecologists, neurologists, anaesthetists and endocrinologists apart from nurses were present. Gaana was born on October 19, 2011, weighing 3.1 kilos at birth. Support from family and the medical fraternity helped me recover fast post-delivery.
Having to manage two little children, household and my health have been the biggest challenges post-delivery. We have missed a lot as a family due to my hospitalization for treatment. (approximately 3-4 months each year).
Did you have to cope with social stigma? What was the worst thing you had to deal with?
I had to deal with needless sympathy. Even strangers on the roads give lot of advice and suggestions, which annoyed me initially. Even today, there are people who think I use my disability to look for sympathy, or suspect my intentions. With time, I have learnt to laugh it off gracefully. I am 75% disabled now, but that hasn’t stopped me from achieving my goals either in my personal life or through my work at Swarga Foundation.
The lack of accessibility and accessible restrooms in most of the buildings are one of the worst things that can affect a differently abled person. Through Swarga, we aim to rectify this by providing accessible restrooms in Corporation Schools, at the railway station and providing a wheelchair-accessible van for their use either inside the city or to other places as well. We also aim to generate respect for differently abled through our I’m Special Calendar series.
How do you keep yourself motivated in the face of adversity?
My education, corporate work experience, communications skills, versatility and being multi-talented, makes me stand out in the PwD (person with disability) community. There are very few among PwDs who are educated and working. These numbers are worse when it comes to women. Hence, I look at it as my duty and responsibility to do as much as I can, that justifies my education, wisdom and intelligence. This is a greatest motivation for me to realise that there are people who are worse off, unable to support themselves, due to lack of family support, finances and self-worth. Through Swarga, we are creating the resources needed to alleviate their pain in whichever way possible. Life is unpredictable and I aim to set an example in handling depression and looking forward to life even after disability.
My husband, Guru, and my children have helped me realise my true potential and continually motivate me to do better in all adversities.
Would you like to share 3 tips for the MS community?
- Focusing our energy on what truly matters in life can really work wonders.
- Make the best out of the situation. We don’t live forever.
- Keep smiling. It may not reduce our pain but can definitely lighten up others’ lives.
What do you hope for on World MS day?
I have always believed that whatever happens is for the best. I have learnt to live a life filled with meaning and purpose. On this day, I hope to inspire millions globally and truly hope that a cure is found for this debilitating disease.
(Swarnalatha J, 36, holds a Diploma in Computer Science and is a post graduate in Hindi Literature. She can read, write and speak 6 languages. She worked for 12 years in Bangalore and Mumbai with companies like ITC, AXA, Mitsubishi and Audi. She is a Motivational speaker, Social Activist, Singer, Artist (arts & crafts), Puppeteer, Green Crusader, Counsellor, Story writer, Photographer. In March 2015, she was awarded “The Woman Achiever Award for Extraordinary Service” in Coimbatore by The LarampMomo. In March 2016, she was awarded “The Woman Achiever Award” by Disoni for her significant contributions to society.)
