She is a story about will, determination and positivity. SHAlINI SAKSENA caught up with this vivacious 37-year-old quadruple amputee with a never-die attitude who wants a message to go out — that people like her are no different
It was supposed to be a fun vacation. But it turned into a nightmare for Shalini Saraswathi who is from Bengaluru. In 2013, she and her husband went for a holiday to Cambodia. On her return, she fell sick — a fever that refused to go away despite various tests. To add to the complications, Shalini didn’t know that she was pregnant when she went to Cambodia — which meant that she lost her baby.
But this was just the beginning of a series of heartbreaks for her, her husband and her family.
“When we came back from the holiday and I developed fever, the doctors treating me thought it was dengue or malaria since I had similar symptoms. But they soon realised that it was something more serious. I lost my baby, I was on the brink of death; the doctors had given my family a two per cent chance of survival. I had multiple-organs failures but I survived,” Shalini tells you
She was in the Capital recently to receive the Rashtriya Swayamsiddh Samman powered by Jindal Steel & Power ltd.
It was much later that the doctors managed to diagnose what was wrong with her — a very rare bacterial infection — rickettsial with morts — it happens to one in a million. Since she was pregnant and her immunity was low it could have been the reason why she contacted this disease. Since the bacteria was not very well-known in India, it took some time to diagnose it and this led to a lot of complications. Her heart stopped, her lungs were filled with water. The bacteria had done a lot to damage to this vivacious 37-year-old.
This resulted in spread of infection to all her limb extremities. Thrombosis set in — all her limbs were blood clotted. Meanwhile, she fractured her left arm which had to be amputated. Over time, her right arm auto-amputated, fell off on its own due to this virus! She had gangrene in her feet and they too had to be amputated.
Despite being a quadruple amputee, Shalini has overcome all adversities. Today, she is working full-time with an organisation called First Source and is the deputy general manager. She manages automation, does business transformation, she runs 10 km (blade runner), she trains everyday and works with an NGO — Adventure Beyond Barriers — which works in the field of integrating people with disabilities. She supports an organisation called Saviours of Soul which works in the field of rehabilitation of sex workers and their children and women of domestic abuse.
She manages all this with sheer will and a magical attitude to life. “If you have the will and feel the need to do something, you can always take time out. And it is not as if I do everything, everyday. But I do take time out for all the things that I feel are important. My day starts at 5 am. I go for a run from 6:30 to 8:15am. Then, I get ready for work and come back home to manage as many things as I can for the day,” Shalini tells you.
But there was a time when she would wonder why it had happened to her. “Obviously, there were things that were going on in the head — that bad things happen to those who do bad things — that is what we are taught. For the longest time, you spend time wondering what wrong you did in your life to deserve something like your limbs falling off without any fault of yours. Of course, I spent time crying, grieving and wondering what was happening with my life. But after a point, you come to the conclusion that there is no point crying. A person always has two options. With what had happened to me, I could have chosen to stay at home and feel awful and terrible about my destiny or I had the chance of turning this around and do the best that I could under the circumstances. I chose the second option because I felt this would be the way forward for me,” Shalini says.
What worked in her favour was that she is by nature a cheerful person. It helped the entire process of moving ahead in life despite the odds.
“My natural happy-go-lucky disposition worked for me as I have been like this since childhood. I also had a great support system — family, friends and husband — they all stuck through thick and thin. When you see how much you are loved, you realise how grateful you have to be and then that journey becomes a lot easier,” Shalini says.
There were paths and instances where the going was tough. People she had known forever, found it difficult to deal with what had happened to her and didn’t know how to be around her. They didn’t know whether to be happy and cheerful that she had moved on or sad and mournful about something so horrifying had happened to her. However, many who knew the old her understood in a five-minute conversation that she had not changed at all — that she was still the mad cuckoo she used to be.
“The awkward moments came when one confronted strangers. It was not as if they intentionally didn’t want to be nice. They were trying to be as nice as they could but preferred to avoid the situation. That is what people are naturally inclined to. But once you break that barrier, things become easy and people see you for what you are,” Shalini opines.
Interestingly, she is not the one to break the ice. In fact, she doesn't even make the effort. The reason is simple. She tells you that it is their problem. She tells people she is comfortable with her disability and her scars and if others have a problem, they need to figure out how to get around it.
This is the attitude she wants other physically challenged people to have. “Unless you have made peace with the place you are in and are able to accept what has happened externally and internally within yourself, one has not reached the potential as a human being. Once you are at peace with yourself, you can deal with all the drama around you. Most people with disability are apologetic about their lives. This probably comes due to the stigma that the society has and how the entire environment works. Because of this, it naturally doesn’t teach people with disability to be confident. The natural thing for people is to come and say: ‘Oh my God, this has happened to you, so terrible. What will you do now in lifeIJ’ All this makes the disabled person even more vulnerable,” Shalini says.
This didn’t happen to her because she was a confident person before all hell broke loose. But she does have a message for other physically challenged people.
“It is always about a choice. One can choose to look at one’s disability, make the most of it and fight for rights. This may not happen in this generation but a couple of generations down the line, India will change its mindset,” Shalini hopes.
For now, she faces the same problems that other physically challenged people face. Having accessibility to a place is a major one. She has to think twice before she can go for cinema or watch a play or go to the mall. And these are small issues.
“A major concern is how physically challenged people get access to good education. How does a person in a wheelchair get to a class that is on the fifth floorIJ Or colleges. How does a person like me, for example, write an exam. Not just them, there are people with learning issues. We don’t have enough infrastructure. What we want is access to things that ‘normal people’ have — to good education, jobs and being able to lead a decent life. When people talk about special needs, these are not special. These are just human needs,” Shalini explains.
The other problem she faced was how to walk again. “When you have your own legs, walking is very natural. But with prosthetics, then you have to consciously think of putting one foot over the foot and you have to get your gait correct because otherwise you will end up waking like a duck,” Shalini tells you.
The fact that she is completely dependent for all her needs on another person was the next thing she had to cope with. “I now have a person who will brush my teeth, dress me and give me a bath. From being an independent person, I have had to make peace with the fact that someone else will always be around me to help with these things. I have a nurse who helps out when I am at home, then there are my mother and sister. My friends take care of all my needs when I am in the office. These are my many minions who help me,” says Shalini who still travels for holidays and work.
Work takes her to Mumbai regularly since the other part of her team sits there. She also does a lot of corporate talks that takes her to other places. Next on her agenda is to test herself for professional athletism.
“It is something that is on the radar and I am working towards. I don’t know if I will be good enough for it but I want to give it my 100 per cent. I also want to, which I do to a large extend through my talks, create awareness among people related to disability. A message has to go out that we are not too different. We are just people at the end of the day,” Shalini says.