LIFE IS A FESTIVAL THAT I CELEBRATE EVERY DAY 

Before I walked into Deepa Malik’s ITC Sonar room in Calcutta for this chat, I thought I was ‘able-bodied’. Sitting in front me was this woman who couldn’t even cross her legs on her own and she’s won a silver in the Rio Paralympic Games (shot-put F53 category), the first Indian woman to do so, can ride a bike, has swum in the Yamuna, gone rallying… whew! And, I thought I was able-bodied! Over the next hour, I tried to fathom the source of this unbridled optimism in the face of adversity. Deepa was matter-of-fact, but I am still looking for my answers. How? Just how?!

Mirchi Malik

I was born in Bangalore. I am an army kid and have lived all over India. I have very strong memories of Nasirabad, Jamnagar, Kota… these are the places where my father was posted. The journey continued with my husband [Colonel (retd.) Bikram Singh Malik]. I haven’t lived for more than two years at one place though. That has become such a habit that even in Delhi (Gurgaon) where I have been living for six years, I move every two years!

 

I was a brat. The whole of my school used to call me mirchi! (Laughs) I have been to at least eight Kendriya Vidyalayas. My XI and XII were in Calcutta… the most emerging and evolving Deepa… from the behenji Deepa to the ‘yo!’ Deepa… listening to English songs, learning about break dance… my first dance party… bunking classes to watching an English movie… everything happened here.

Being a brat never took away the values though. There was no compromise on academics. I was always among the top three. I would win the maximum trophies whether in sports or curricular activities. I played pretty much everything… from kabaddi to kho-kho to baseball to basketball to volleyball.

I have an older brother, Vikram. In terms of comparison, he was the good boy. My father has forgiven me now! I had to win an Arjuna Award to be in his good books (laughs). I was an out-of-the-box kind of a child.

First sign of trouble

I was about five... five-and-a-half years old and my father could see the daughter had changed... suddenly she did not want to play outside.... I am glad my dad did not want a Deepa sitting at home and playing with dolls. He even had a long chat with my mother... ‘I hope you are not curbing her too much’. Back then in 1975 for a person to go and meet a child psychologist.… He was an alert and conscious father. I think that helped in my diagnosis and I did not get paralysed then. I had the golden years of me walking.

One day he saw that I could not raise my leg to get into the school bus. He started travelling from one place to another and finally when he exhausted his leave, he took me to Pune Command Hospital and there I was admitted for a year; they did all sorts of check-ups. I got operated for my tumour in the spine in December 1977 and then another year of rehabilitation followed.

Then I walked again… till about 29... till 1999. During my teenage years, I was fine. I was swimming, riding.

When I look back, I was barely five. I think lots and lots of credit goes to my parents. I really learnt the true art of parenting from them. No way was I feeling inferior. No way was I made to feel sick or a burden. 

But they were really worried about my biking. They were overcautious about me falling and getting hurt. I would be sometimes angry with them because when it was work... like you have guests and you want someone to run and get the chicken, then it’s me, otherwise it was like , ‘Why were you riding?!’ (Laughs)

And, second...

The second time the two-layered cyst came back, it came from within the spinal cord. That part, when it had to be cut, the spinal cord broke and there is no connectivity between that level. They had to do (surgeries) in series. So, overall I have had three major surgeries.

The repetitive tumours came as a shock to me. It took me about an hour of crying. But then I had to take charge because I went alone for my MRI and check-up. Bikram was not there (he was in Kargil war sector). Dad was in a corporate job post-retirement, working on a project in South Africa. It was me, my mother and the two girls [Devika (now 26) and Ambika (now 22)]. My brother was on a foreign posting. Dad-in-law was settled in Maharashtra. I had to take charge.

Life slipping away, getting it back

I strongly believe that everything happens for the good. You just need to find the good in it. I have learnt to celebrate life. I have stopped taking my little joys for granted. Little things make me more happy than the bigger stuff. I have emerged as a better human being who realises that this is one life and you have loads to do.

Paralysis, disability, challenges, social attitude and life slipping away from your hands and then getting it back.… It was slipping away at a time when my husband was at the war. So, even he could have gone! I didn’t want my life to be regular any more.

Starting over

First was to rehabilitate myself again. This was around 2005. I needed to restrengthen my shoulders and redefine my body language. I went to the Indian Spinal Injuries Centre in Delhi and there was a workshop under Arun Sondhi. He was a Paralympian powerlifter. He was not representing India but Sweden. He had left his country because he thought this was not the land of opportunities. That gave me the fight. What you did outside, I am going to do here, I thought. I will drive a car, ride a bike.… I saw some clippings of his and I tried to recreate that in India.

I didn’t even have a passport in 2005, so for me to think of going abroad was beyond imagination. My husband was on the verge of leaving his job because he felt that he had neglected me enough. 

We were just waiting for his pensionable service. Meanwhile I had already started the restaurant (Dee’s Place, Ahmednagar, Maharashtra). So, with whatever extra money I was getting, I was investing in my travels to go to Bombay, Delhi and meet people. I learnt surfing the Internet. I had come to Delhi to attend this six-week seminar in which I learnt a lot... to travel, manage bladders, change clothes.… That gave me the wings to fly. Then I started travelling frequently.
Making my own bike was a challenge. A woman biking and a woman with this kind of disability... everybody said ‘No, you can’t do it. How will you do it? Who will believe in you? Who will give you the money to do it? Where will the money come from?’ The biking community heard there is this crazy woman who is getting her bike made. Some people wrote about it. The rest is history.
 

Medal Deepa

I started when I was 36. And ever since I have been smiling more! There is a huge sense of achievement. Swimming happened to me because I was doing hydrotherapy. Someone saw me swimming and they suggested I could swim for India. I took it up. As it is, I was craving for some identity. Bike wasn’t happening.

Then I trained to swim in the Yamuna. One thing led to the other. Once I started getting medals nationally in swimming and I got one international medal in Kuala Lumpur, it gave me some profile. What do you tell corporates? Who are you?

Though I was focusing on javelin, I was continuously participating in shot-put and discus. Three medals meant three cash awards and three cash awards meant sustenance for a year for the sports and the diet. We don’t get sponsorships easily. At least back then we didn’t.

Today people are realising what para-sports is. There is a lot of awareness post-Rio (Paralympics, 2016). I am really happy to be a medium of change. It’s not just a medal anymore. It has become synonymous with empowerment, of emerging out of the stereotypes of age and gender.

Fighting to be fit

There is a lot of stretching involved in my fitness routine. Passive movements are a must to release the spasms. I also have to keep a close watch on weight-bearing. When I lie down, I need to be turned frequently. While sitting I need to change positions. I need assistance for that. I need to have an attendant very close. I am sitting on this wheelchair now from 8.30am! When you do rallies, the terrain is not friendly at all. No woman with my disability can handle that.
I lift weights. I started with 3kg dumb-bells, then 5kg, then 7kg and now I am at 15kg. Rome wasn’t built in a day! My initial fitness came from swimming. Now I do it as cross-training. I have to go to the gym thrice a week. I do my stretching at least four times a week. Passive movements are every now and then. I could get spasms and anybody who is around me has to help me do it.

I train for three-four hours in the morning and do two hours of skill training in the evening. The rest of the regimen is also connected to your training. Hot-water bath or a cold pack, massages, the diet, even the rest is part of training... lie down on your stomach, lie down on your back. For Rio I could not flip through my phone because that would also tire my smaller muscles! This kind of discipline came up and then the medal came. 
 
The Rio effect

I already had a face before I won the Rio Paralympics. I had emerged as a motivational speaker. I feel blessed that I could attract attention towards Paralympics through my medal. My medal has become a sign of hope. It changes the outlook of the society and makes it more inclusive. This medal has become an instrument of change in a lot of ways. It has raised the bar of acceptance of disability, of what India thinks about disability.

The family

My husband and I had a short conversation before my operation. He gave me that faith that he’d be there. ‘Don’t worry about your legs, I’ll carry you in my arms,’ he said. And it’s been like that.

Of late, he doesn’t travel so much with me. His basic passion is fitness. He feels very happy if I am in sports. He often tells me that exercising and eating right are the two things best for the human body…. This is a good situation you are in... what’s the big deal?

He has always let me find my own way. Sometimes I even get angry because he thinks I can do it all! I am like, ‘Sometimes ask me, man!’ I always wanted to be the man of the house and I am the man of the house. He is such a laid-back, chilled-out person… that has helped me have faith in my body in spite of being disabled. It makes me feel very purposeful!

My daughters were unlike me growing up. They were the finest girls and easiest girls... compassionate girls. I give a lot of credit to my disability for that. They were around a mother who was bedridden and then they saw the mother recover. They have grown up on the values of being there for each other. So, it’s been a plus, plus, plus, and plus. So, why should I feel sad about disability?

The no-nos

Chocolates are a no-no, but I cheat all the time! There are restrictions as to what I can do with my body. I don’t have front torso balance. Even if I am doing weight training, it has to be handed over to me at a certain angle. I don’t even have support in my spinal column. I have to be careful about the temperature of the body. I have to time my bladder. It’s been going on for 18 years. It’s become part of the habit. I think I became too fond of living to crib about it. I just embrace life.

No regrets…

No time for regrets. There is so much to do. Depression can go take a hike. I am very human, though. You really have to talk to people who live 24x7 with me, but the only time I lose it or I fret is when I am not on time. I think by nature I am punctual. That helped me battle my illness also. I always want to put my best foot forward. My children call me a perfectionist.

Sometimes I have to work on myself. I realised that what is two on 10 for me, could be 10 on 10 for others, in terms of pain or tolerance.... To me a cough and cold is two on 10… the way their body aches in viral, my body aches 24x7 like that.

I do get worried and things do upset me sometimes. And when they do, the only different thing I do is I don’t allow myself to be there very long, in that zone. I never say I bounce back. I always say I bounce forward. We try to avoid it and resist it. But trust you me, every time you go through pain, it’s a dark tunnel, but the moment you cross it, there is a light on the other side. When you emerge out of it, you are much stronger than before or you are more experienced than before or more compassionate than before. You are more understanding than before. You evolve every time. It’s good to go through lows because it gives you the value of highs.

I plan. I think I have used the natural gift of the woman being a multitasker. I do feel tired. Everyday has a deadline now. Ever since I got a Padma (Shri) award, I haven’t had the time to speak to friends. Now I am getting that feeling of taking out five days to myself, put my phone on Do Not Disturb. 

But… life is a festival that I celebrate every day.

— Saionee Chakraborty