Interviewed by The Success Today – A Digital Webzine
Could you shed some light on your medical journey?
I noticed fairly early on that I was different from others. I had to put in a lot more effort to do the same things that other people did seemingly easily. I’d experience difficulty every day. One day I’d have an issue with my vision, the next day my legs, the third day my hands and so on. I did try to seek help. For over 10 years no one believed me or my symptoms. They thought I was making things up. Doctors would tell me it was nothing – according to them the symptoms seemed vague and did not add up.
My vision continued to blur, I walked with a walking aid, I needed help to change clothes, and I would get 45-50 spasms a day. I had to use brain teasers daily like translating letters to their corresponding numbers, like repeating 1A, 2B, 3C and then backward 26Z, 25Y, and 24X. I would get lost in my own washroom. My brain would play games; the washroom would appear like a maze and I couldn’t find the exit. On the outside looked like any other person but all the drama was happening inside me.
I would wonder what the reason was but I’d give up after a while believing what others often said to me, that it’s all in my head. And surely it was, as I would later learn, although more literally than I had hoped.
I was 20 or 21 when I went for my first MRI. It wasn’t prescribed, I asked for it because I knew something was wrong with me. I had shortly before fallen seriously ill, suffered three attacks of Typhoid, was experiencing vertigo, my vision was blurring, and my body would randomly go numb or tingle with pins and needles – I didn’t know what I would find out but I knew something big was about to hit me.
The MRI revealed several lesions in my brain, my spine and my optic nerve. My nerves were under attack by my own immune system. The cells that were protecting me ended up destroying the coating on the nerves that played an important role in taking signals from the body to the brain and vice versa. I was finally diagnosed with Multiple Sclerosis (MS) – an illness that I dreaded as I was aware of what it is, but I was happy to finally have a name for the illness I’d been battling.
Even now, I don’t sleep with the front door closed. I keep it unlocked in case I fall and nobody knows what has happened to me. I keep my emergency contacts on the bedside and near the main entrance, along with my meds and instructions for what to do if I’m having a spasm. Every day, when I wake up in the morning, I have to check if I can see and if I can move my hands and legs. It’s amazing how many things we take for granted. For me, every day is a new day. I love it, I love my life, and I try to live it to the fullest.
Nothing Stops Me
My doctor told me after a particular hospital visit that I can only walk about 2kms now; not run or do anything else with my legs. I decided that was not going to be me. I was an athlete in school. Others don’t know what I can do; I know myself the best. I’ve run Pinkathons despite my condition – while limping and with an ice pack one time! I’ve climbed mountains in the Himalayas, jumped off cliffs, bungee, skydived, trekked, ridden a bike, and not.
Late last year I had a relapse. I began to limp and realised it was getting worse. But I wasn’t ready to surrender. I wanted to make the most of being able to even walk. So for New Year, I backpacked Europe with a 10-kilo rucksack. I just decided to scoot. It was tough, no doubt, but it was also exhilarating. I’m so glad I did it!
I don’t do this for me alone. I’ve had people come up to me and tell me that they finished a 100km Oxfam after seeing me walk and run even as I limp. I often take to social media to put my story out because I know people are listening and watching. I think it’s a powerful medium. I cheer for others via social media, and it makes me so proud and happy to see someone achieve their goals that were inspired from my journey.
What Keeps Me Going
I don’t just exist; I live. I make a checklist every quarter of what I want to do, and then I go ahead and do those things. Even tiny things like folding a bedsheet and washing utensils is a win for me. My mission in life, as Maya Angelou put it, is not just to survive but to thrive! And as my dad kept saying since I was a kid “It’s better to wear out than to rust out”
I make a note or take a picture when I come across something fascinating or positive, or when someone tells me they look up to me. This is nourishment for my soul, especially on a down day when I’m questioning if I’ve done enough. I go back to those notes to remind myself of the fight I’ve been fighting and how far I’ve come.
I love myself and am my biggest cheerleader. I talk to myself every day; I imagine my nerves with their tiny heads struggling to hold everything together, and I tell them I’m sorry they have to go through this ordeal but also that I’m grateful. I thank my body every day, even if it’s acting cranky, for doing everything that it does for me.
Fighting the Good Fight
I wanted to continue working no matter how hard it was for me, with MS, because I felt the need to raise awareness about invisible disabilities. So, apart from my day job, I head the accessibility network (previously known as disability network ) in my organisation and work to create a more inclusive environment for all our persons with disabilities, globally. I believe that the stigma needs to go. Persons with disabilities have dreams too, and if provided with support, systems and accessibility, they can achieve anything.
I began by sharing my story, widely and willingly, and getting people in the company to see the need for a safe environment where people can talk about their disability and freely ask for support. It’s so important to hear people out, especially because everybody’s needs are different. Even two individuals with the same condition/disability can have entirely different needs. Aim to fix the system, not focus on the problem.
Some days I think that my MS had a purpose all along – to help others so they don’t have to go through what many others went through in the past. I want to make it easier for people with disabilities to work and live in society. And most importantly, when they share their story, I want them to feel safe and supported, not marked with stigma.
For me, since the very beginning, titles don’t mean much. I don’t believe that somebody has to earn a certain designation to become a good leader. I used to tell my team the same thing, “don’t chase titles,” – If we look at India, we are a population of over one billion people, and not all are going to become managers or CEOs. Instead, irrespective of the title, lead with purpose.
The other thing I believe is that our job is a part of our lives, it is not our whole life. Yes, it is important because it pays the bills and puts the food on the table but we need to ensure that we live beyond our jobs. I know so many people who are great at their work but when they look back they realise that they buried themselves in it and barely lived. Pursuing our passions and hobbies makes us whole, enhances our personality, and makes us more authentic leaders!
Advice to Young Women Leaders
Don’t leave without considering your options: Many women leave the workforce when they are about to get married or have a baby. It’s ok to do so if it is a personal choice but if you think it is the only choice, I’d urge you to reconsider. Companies today are hiring and rooting for more women in leadership roles. They want us! They are providing support, facilities and opportunities that were unheard of 20-30 years ago, to retain women. Make sure you’re aware of the support offered once you return. Consider your opportunities carefully before calling it quits.
Invest: This might be the oldest advice in the book but it’s the one that makes a huge difference. No matter what you earn, invest a certain percentage of it every month. Educate yourself about the power of compounding and then leverage it. Don’t just work for money; make money work for you.
Use your gifts: A lot of people think that they are good/great at just one thing, and they stick to that; never exploring more. But everyone is gifted in so many different ways, and should make the most of it! If you don’t use your gifts, they will atrophy. What a waste! Create your own opportunities if you must, but use your talents/gifts.
The Future of my Imagining
As people, we are all different, bringing our own perspectives to the table. I hope for a world where these perspectives are valued and respected. Especially in countries like India, which are overpopulated, I hope for a future where people are not just a number or a head count. Where we ask everyone who they are, what their story is, what they bring to the table, and what we can do for them.
What are your most important leadership and life lessons?
Make today better than yesterday, run your own race
As Robin Sharma says, develop an unbeatable mindset, heart set, health set and soulset
Prioritize your mental health and well-being, physical health and fitness, meaningful relationships, career and financial security.
What is the price of that wall?
Remember that wall that protects you also restricts you
Focus and take care of your mind, body, heart and spirit
If you stumble, make it part of the dance
Treat others as you want to be treated
Be mindful of your unconscious biases
Be driven by passion and purpose
Get up, dress up, and show up
Be you, be a human ‘being’
During my 17 years of corporate journey, here are a few of my accomplishments that I’m grateful for, among many.
Featured in the Heroes Future Leaders Role Model List – 2022 supported by Yahoo Finance
Speaker at the 2022 FICCI (Federation of Indian Chambers of Commerce & Industry) Innovation Summit
NCPEDP-Mindtree Helen Keller Awardee – 2021
Finalist for the 2020 D&I Champion of Change Award by Community Business sponsored by Intel.
Featured under #100MindfulWomen by Shenomics, 100 stories|100 lessons and inclusify.io
I’m a strong advocate in the Diversity & Inclusion (D&I) space and have been heavily involved in corporate responsibility in the company and community. I’m often described as a storyteller and an adrenaline junkie who loves and celebrates the life and has a penchant to research any topic under the sun. Despite living with Multiple Sclerosis (MS) for over a decade, from using a mobility aid to running, sky diving, bungee jumping, trekking in the Himalayas, and backpacking across a few countries in Europe, all the while redefining and breaking stereotypical mindsets of what the disabled community can achieve.
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