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How Multiple Sclerosis did not deter this woman from fulfilling her passions and dreams

21st Jun 2015
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Five years ago Swarnalatha was diagnosed with Primary Progressive Multiple Sclerosis, a condition that gradually worsens. She was completely shattered. “I couldn’t’t imagine the embarrassment my family had to bear. The second option was to crib, complain, and grieve about my condition. I enjoyed being sympathized with. Eventually, I got sick of this phase; since it didn’t’t help me in any way. Then I tried the last option – of being proactive,” says Swarnalatha.

Born and brought up in Bengaluru, Swarnalatha is the second of four daughters to parents who were in the government service. After completing a Diploma in Computer Science, Swarnalatha started working as she had to help her family financially and pay for her sisters’ education. Having lost her father much before her marriage, Swarnalatha has had to look after her family. It was only after marriage that Swarnalatha was able to complete her Masters in Hindi Literature.

Swarnalatha
Swarnalatha

Hailing from a lower income family, Swarnalatha says, she’s had to fight several challenges. “I started earning at the age of 14, taking tuitions, making handmade purses and hairbands and started my career in the corporate world at 19. I have worked for Companies like AXA, ITC, Mitsubishi and Audi in various functions including Admin, HR, Finance, Secretarial, Customer Care, Marketing activities, event management, advertising, training, purchase and content writing with 12 years of work experience,” says Swarnalatha.

The turning point

On October 26, 2009, a day before her 6th wedding anniversary will be etched in Swarnalatha’s mind forever. For that’s the day her life changed completely. She had fainted due to a sudden fever and she describes this fever as something she had never experienced before.

“I thought I was close to death. I was weeping continually looking at my two-year old son. My condition was way beyond the comprehension of the local doctors. I was shifted to Fortis. The next day, on my wedding anniversary, all the tests were done. During my 6-day stay at the hospital, doctors failed to confirm the diagnosis,” says Swarnalatha.

She was told that the doctors had to sit and discuss her condition in a panel and arrive at the prognosis. When Swarnalatha looked at her reports it said Multiple Sclerosis. She asked her sister Shyla to Google it as she had never heard of this condition. “The more I read about this disease the more I convinced myself that I didn’t have this disease and wore a brave face, but from inside I was becoming weaker… I would collapse anytime,” says Swarnalatha.

An eye opener

Swarnalatha went to Kerala to try Ayurveda. She says this stint gave her a new perspective in life. For the very first time she came to truly understand that everyone has problems.

“Only the magnitude varied and that I have to learn to face the problems bravely, because this was the only option left. I read works of Eckhart Tolle, Paulo Coelho, Louise Hay, Anita Moorjani, Sri M, and many more, practiced meditation, yoga, pranayama, Sudarshan Kriya, all amidst the nature, on the banks of River Periyar. And everything was pointing in the same direction -“To Be”and ‘To Be Me.’

She says: “I missed being with my family, I missed many birthdays, many wedding anniversaries due to my continual stay at hospitals. I understood that money can only give comfort and luxury, not happiness.”

Swarnalatha adds that she started emphathising with nature and began to see divinity in everything. “And when I returned home, after 100 days, I was a different personality, looking at life with a different perspective. I had lost of weight, looked younger, and most importantly, felt at peace with myself. I had stopped taking guilt trips and started appreciating gifts of nature. I made myself clear that Multiple Sclerosis has crept into my brain, I will not let it into my mind,” adds Swarnalatha.

Swarnalatha, with her husband Guru and children
Swarnalatha, with her husband Guru and children

Creating a difference with Swarga

While in the hospital, Swarnalatha came to a Now or Never moment in her life and realised that she needed to play with her strengths. “I am good at teaching, singing, arts and crafts, creativity, communications skills, planning and execution,” she adds.

Her husband, Guru, possesses excellent leadership qualities, negotiation, team management and problem solving skills. So when the couple realized that Swarnalatha would not be cured, they decided to utilize all their skills to make a difference to society.

Thus was born Swarga. SWARGA, which means heaven, is an acronym for SWARna, GAgan (son), GAana (daughter), and Guru. Swarnalatha says,

“We designed the objectives of Swarga around our skill sets and at the same time the objectives ensure that our responsibilities towards our children, family, society, MS (multiple sclerosis) persons and environment are fulfilled,” says Swarnalatha.

Challenges

Although Swarnalatha had many ideas the primary challenge she faced was her body being weak. Thus she saved her physical energy to only do work related to Swarga. Her husband came forward to fulfill other responsibilities including assisting her with Swarga’s activities.

Handling the disease, progressing disability, growing children, managing her day-to-day activities –everything seemed to be a challenge. Apart from these challenges, maintaining mental calm, giving a deaf ear to the unpleasant comments made by people also became challenging at times. “But looking at things that Guru and I want to do for the society, all these things seem trivial at the end,” adds Swarnalatha.

Swarnalatha adds:

“I’m not super rich, influential, neither am I a native of Coimbatore nor did I know Tamil, I’m a woman and disabled –these factors were enough for me to give up on my dreams easily. The journey has been very challenging considering the fact that most of the times I’m physically ill and hospitalised about 3-4 months in a year. My family was a great strength. My children understand my situation and completely support me. They understand that I can’t take care of them like other mothers do but definitely much more talented than other mothers and making valuable contribution not only to the people around us but also to the society.”

Life hacks

Swarnalatha says that if she was going to spend most of her time in hospitals, she might as well find happiness in hospitals. She says that she found happiness in small joys like in the antaksharis, dumb charades, sketching, story writing, puppets, photography, singing, handicrafts, harmonium, keyboard and learning new languages.

She adds that she found it extremely fulfilling to see her hands full of colourful stains and Fevicol. And every time she washed her hands, she felt as if she had reinvented herself.

“I can’t move my right hand well but I believe in writing and have written many stories and intend to publish a book of Short-stories shortly and also unfold my autobiography when the right time comes. My right hand doesn’t’t give good strength to hold objects however I’m pursuing my passion of photography because I love it. I was happy bringing smiles on lady co-patients at the hospital,” says Swarnalatha.

Swarnalatha adds: “I discovered that many women in Swarga who were into their early 40s exuded their hidden sensuality given a chance and they were extremely glad to see themselves as a different personality through the lens. I had won their hearts and raised their self-worth too. With more acceptance life has become much simpler and easier. The first time I held a walking stick, it was probably the one of the saddest days of my life. But now, when I got my new rollator, I embraced it and felt the design was cool and it will in any way not lessen my beauty. Swimming is my passion, I swim whenever possible.”

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